A source of light and courage for people with chronic, incurable conditions. My goal is to help people live as fully as they can and not let the fear get the best of them. I also envision it as a resource for survivors of critical illness who must find a new normal. Each day I am here, I plan not merely to survive, but to be my very best and savor my days. I hope you will too.
This week, I attended a course designed to quickly reeducate nurses coming back to the critical care realm who have been gone awhile. It was fast-paced, intense, and eye-opening. There is a lot of information I had forgotten–I’ve been gone over 10 years–and some new things too. When I worked in the ICU before, I was a different person than who I am today, with a different, new set of life experiences and skills. And of course, critical care has changed a lot too.
As a part of our ventilator review, we each had to be placed on one for a few minutes. This scary exercise was to demonstrate what it’s like to be on the receiving end of life support. The prospect terrified me. Even though we did it through mouthpieces (not endotracheal tubes) and in a controlled environment, I worried I might panic, blow a lung, or have an asthma attack.
The respiratory therapist gave me the option of participating, given the problems I have with my lungs and heart. But I felt as though going through the experience would give me more empathy and understanding of people on these machines.
To call being on a ventilator a harrowing experience is putting it lightly. The therapist placed me on the “easiest” settings (which he did for everyone). Even the minimal dose of continous positive airway pressure (CPAP) was very uncomfortable. It felt as if air was being shoved down my throat. We progressed to pressure support, and I had to take a little break. The final demonstration was pressure control ventilation, set ridiculously low compared to what patients are prescribed. It was like walking outside into hurricane-force winds face-first. It was a blast that puffed my cheeks out forcefully and made my lips and fingers numb (hyperventilation, brought on by the ventilator). It certainly was an eye–and airway–opener!
I was prepared for this situation. The average non-medical person who gets pneumonia and is waking, confused, from sedation in the ICU will be caught completely off guard. To add to the terror, that person will have an endotracheal tube making him or her gag and feel like choking. No wonder these people try to grab their tubes and fight so hard–they panic! There is absolutely nothing normal about ventilator breaths, and even though the machine is helping you, it feels as though you cannot breathe.
This has shed new light on why people “freak out” as they do in the ICU, and might explain some of the psychosis, PTSD, and cognitive changes we sometimes see when people move out of intensive care. This experience will help me to communicate more effectively with patients and their families.
My first night working in the ICU after nearly eleven years went well. I was very nervous going in, with the same feelings I have before going on stage or stepping onto the glass at the Sears Tower observation deck, the Chicago streets 100 floors below me. As in those two situations, I boldly went ahead with my new job. Stepping through the ICU doors was an act of gritty courage.
My preceptor and I were assigned to two women I’ll call Jill and Jansie (Jansie is the name I chose for my novel’s main character). I will muddy some of the details for the sake of patient privacy.
Jill was a twentysomething woman who had taken an overdose and was on a ventilator. She was found unconscious by her aunt. They were supposed to go shopping together and Jill didn’t show up. Jill’s boyfriend alerted the police in the meantime to go and check on Jill, based on a cryptic text she had sent him. Jill had a history of addiction to various drugs. Her suicide note stated “I’m tired of fighting”. When I entered Jill’s room, I saw a tiny young woman whose size and pretty face belied the rumors of her violent nature. She was adorned with tattoos of roses and butterflies and messages of encouragement.
Jansie was in the adjacent room. She was middle-aged and had suffered complications following an orthopedic procedure. The root of Jansie’s problem turned out to be pulmonary hypertension and mild congestive heart failure. This was all new to Jansie, who was crying while trying to watch the Olympics to distract herself when I entered her room. Jansie’s first words to me were an apology for crying and an expression of great fear and frustration. Her entire life had turned upside down in the past month, and she was fearful of both death and burdening her wife. Her feelings were amplified by new, chronic pain from a neck injury. Several times throughout the night, I found Jansie sobbing. She expressed fear that she will never be the same and asked why this was happening to her.
i felt a bond with both women, especially with Jansie. I remember the flood of terror that bowled me over when I was first diagnosed with PH. My own chronic pain from nerve compression and arthritis in my neck struck in 2015 and stayed with me, adding an even darker shade to life. It peeled my fingers from the edge of the cliff PH had thrown me over, and I went into emotional freefall. I shared my experience with Jansie, with the hope she’ll see I’m able to live a fairly normal life five years into my diagnosis. I caught a fleeting look of reassurance on her face, and she stopped crying. I even got a few laughs out of her with my crazy antics (“You can be G.I. Jansie in the war with your fear of PH. You can even shave your head like Demi Moore if you want!”). Then the next wave of shooting pain would hit and take her down again.
Jill reminded me of myself, as I was three weeks ago. The police came to do a wellness check on me. My bank notified them I felt like harming myself over my financial situation. I was in a dire panic that night, beating myself up for what I’d done, angry as to why I have compulsive and addictive tendencies, afraid of what I’d gotten into. I felt hopeless and saw no way out. Jill also reminded me of two young women–one of them a teenager–in my recovery group. Those ladies are struggling with drug addiction, and as time passes, two kind but hurting souls have emerged from under their anger. My addiction is overspending, but I do it for many of the same reasons: to deal with “something missing” and to make reality disappear for a while. Without it, my anger and panic flare. I suspect there is a wounded girl under Jill’s violent facade, and I know how “wounded” feels. Mental illness and addiction are two highly stigmatized problems, and intense shame goes with them. I could feel much of Jill’s emotional pain.
Perhaps my problems can offer rays of hope for the people I will take care of in the ICU. Maybe they’ll see I am the type of person who doesn’t stop, and it’s possible to push forward with life despite an incurable condition, pain, and living without my “substance”. Maybe they will look at me and see someone making the best of things, putting one foot in front of the other, one day at a time, and see that I embody possibility. I am “tired of fighting” most days too, but I have learned to keep moving and working and learning from my experiences. I hope my patients will see that.
I am the author of two blogs. At times, this can be confusing. Like today: I am not sure whether this post is more appropriate for this blog or the other.
The answer is: both.
I attended a recovery meeting last night and, as usual, it was dynamic, engaging, and helpful. I am there because of compulsive spending, debt, and online games. Most are there for alcohol and drug addiction. Others have “soft” addictions like mine. Soft addictions include food, sex, gambling, stealing, cutting/self harm, and compulsive spending/shopping. These have as much power to destroy lives as the “hard” addictions.
The meeting was led by a dynamic and energetic facilitator who speaks well and knows her stuff. Of all meetings I go to, I like hers the best. Last night, she brought up the concept of “flowing with hope”. This means to extend hopefulness to others.
When you feel as though your own hope is miniscule or even zero in the face of your chronic illness or other overwhelming problem, how can you possibly extend it to those around you? The answer is to “fake it”. I don’t mean be fake, or offer false hope. If you are like most people, you have more hope for others than you do for yourself.
Extending hope to others will help both you and the recipients. First, find what you can be grateful for in your own life (there is a lot, regardless of your circumstances). In my case, I can be grateful for a day when I can breathe well and do normal things like climb stairs and hike without my legs getting heavy. I am grateful for the time I’ve been given, considering the average survival time after diagnosis for my lung disease is 3-10 years. I am on year 5, at least. It’s probable I had the disease for a few years before diagnosis. Some sources say you can survive up to 20 years these days, with the right treatment and expert care. In other words, I “never know”. So days when I can breathe and be close to “normal”, and the time I have been given are two things for which I am grateful. You might have a dog or cat sitting at your feet as you read this. You might have food in your refrigerator. You may have only one cycle of chemo to go. You might have qualified for the Boston Marathon despite your disease. Or there are plenty of family and friends around you as you are in the throes of pain, nausea, fear, and depair.
Once you have found two or three things to be thankful for, pay it forward. Pay it forward with hope. Stop talking negatively to other people, even it only means staying neutral. Encourage them and lift them up in small ways. When you do that, hope flows through you. It overflows. And in the process, it leaves a trace within you each time.
I have a tattoo on my inner forearm that reads “Help people. EVERYONE!” I put it there to remind me to be on the lookout for people who need any kind of help. Hold doors open for people. Smile at them. Raise money for places like St. Jude Children’s Hospital, Partners in Health, or the Leukemia and Lymphoma Society. That’s what I do to get out of my own brain, and to be useful. By helping people, I extend hope to them.
The problem is, I don’t do it every day. That’s my goal for February, or for Lent. Let hope flow to others each day, for 40 days. I think I will.
Finally, the leader stated we haven’t evolved as a species by beating ourselves up. We are hard-wired for survival, and beating ourselves up goes against all our program. The resulting internal conflict leads to inner turmoil and unrest, and people will use or engage in their dysfunctional behavior to “make it go away” or cover their feelings. But doing something for someone else while in this state smothers the negativity. To flow with hope is in line with our need to survive, and is good for all involved.
My goal for this blog/website is to help people live their best lives in the face of chronic or incurable conditions. To improve my skills, I chose to enroll in a life coaching course. The course I chose is “Life Coach Certification (Beginner to Advanced)” by Kain Ramsey. The session I’m currently working on involves a story about a man going about his business then suddenly falls into a deep hole. He fights to get out of the hole at first, but gets weary from his efforts. Depression, doubt, hopelessness kick in. He is too proud at first to call for help. Then a therapist happens to walk by, then a doctor. I imagine the former offered a form of cognitive behavioral therapy (CBT), and the latter some antidepressants or anxiolytics.
The third person to come by is a friend or classmate who jumps in the hole with him…but reveals how to get out because that person has been there and can relate. Such is the essence of life coaching.
I’ve mentioned a thousand times I am a big (but recent) fan of the Goo Goo Dolls. I am also a huge fan of U2, and for over half of my life. U2 has a song called “Stuck In A Moment”. Bono wrote it about Michael Hutchence of INXS, a good friend who profoundly affected Bono’s life. Hutchence was in the type of hole Ramsey describes. Only he didn’t make it out.
The reason I am writing about this dark subject is because a week and a half ago, I nearly got stuck in a rough moment–forever. Not only do I have pulmonary hypertension and fibromuscular dysplasia; I also have severe depression, anxiety, and addictive/compulsive behavior. The latter got me into very serious trouble. My issues with depression and compulsive shopping preceded any other problem by decades.
I binged on spending between September and the first week in January, sometimes several days in a row, and over $200 each time. I knew I was headed for trouble, yet I felt some force was driving me to shop, to fill the holes in my life with “things”, to enter stores and not fight this force, even though I felt like a failure.
On January 12, I started working with a debt management company and their initial payment was $700. That amount was taken out on Jan 15, along with my $412 retirement loan repayment. I anticipated these. What I didn’t realize was I’d scheduled many credit card payments and car payment all for that date. The debt management rep warned me to cancel these, but I forgot (thank you, gabapentin, for messing with my brain). I also made arrangements with the bank so I have limited access to cash, and no more debit card. It’s a steep learning curve with no overdraft protection anymore. When all was said and done, I was $1190 overdrawn, and there was nothing I could do about it. The bank threatened to shut down all my accounts permanently and turn me over to collections.
I was very upset talking with the bank reps, trying to explain my mistakes and eventually telling them I am in a recovery program with people recovering from drugs and alcohol, to learn the tools they are taught and get help. I spoke of the hopelessness of my problem; how “this keeps happening no matter what I do”. Next thing you know, the police were at my door for a wellness check. The bank rep put another rep on the phone during our conversation…while she went to call 911. I was going to kill myself.
The following day, I confided in a few close coworkers, who then got concerned and went to management. Management went to Human Resources, and now I have to jump through hoops to keep my job. I must go to mandatory counceling, with a counselor who is “in the system” and chosen for me. Meanwhile, I set up an arrangement with the group of counselors my psychiatrist recommended, so I am seeing TWO separate therapists in response to this emergency. I am only allowed three “free” visits with the one arranged by my employer. Then I’ll have a $90 copay, regardless of who I pick. And when cash is already an issue…
Anyway, I believe in honesty and transparency, so I chose to share this with you, my appreciated readers. This issue is proving to be MUCH harder than dealing with the PH and FM. I might have even forgotten about them as all the mayhem was happening. Sometimes emotional turmoil is worse than physical illness or pain.
For now, my plan is to a) not spend at all for the month of February, except for cat food/care, groceries, gas, and utilities, b) return to SMART Recovery meetings, church, and social outings with Meetup groups and c) practice mindfulness each day. We’ll see if I can stay off the ledge. I am never really that far from it, even on good days.
I don’t care what people say, home décor can affect your mental and physical health.
Last spring, I got a tattoo on my left inner forearm stating “Find the Beauty”. I placed it there to remind me there is beauty in every situation and it’s my job to find it. Not merely search for it.
I’ve told the story many times, ad nauseum for a few people, but the song “So Alive” by the Goo Goo Dolls cut through my very thick, dark wall of fear and anger in late 2016. I went to my first Goo show in Hershey that fall, and by the end of the night I was a die hard fan. Just like that. It was an amazing experience. The other fans are beautiful people. John Rzeznik is one of the most beautiful men I have ever seen. Robby Takac is always pleasant, and his pictures on Twitter and Instagram show how fun-loving he is, even off the stage. He seems really interested in everything and engaged with life.
I chose to disengage with life in 2015, when the high and distraction of finishing the New York City Marathon despite my lung condition wore off. I was hit with severe pain in the left upper back, down the arm, and left chest area. I’d had weakness in my left arm on and off for a few years, which I now realize was related to the vertebrae in my neck. I was demonstrating proper burpee technique to a coworker on Christmas night. Two days later, I was plagued with the most incredible pain I have ever felt. By New Years Eve, I had been awake three days straight and my heart rate was in the 130s at rest, all due to the pain. Each day I was at the emergency room or the chiropractor; nothing helped. Finally, on January 5th I had an MRI. It showed moderate to severe arthritis with bone spurs impinging on all the nerves to my left arm. Nothing they can do about it either.
I was started on Gabapentin, which gave me a lot of relief. But the pain had sent me into a downward spiral. Like water as it gets closer to the drain, I had begun a much faster descent into the despair brought on by my lung diagnosis two years earlier. But I woke up at the concert and realized I hadn’t been expecting such a profound experience. Therefore, there MUST be beauty everywhere.
In 2011, I met Bono. It was serendipitous. So few miracles had happened in my life, this one blew me out of the water. Later, I realized miracles happen every day if I look for them. Only I would forget to look. And when diagnosed with my PH, I lost sight of them altogether.
The tattoo saying “Find the Beauty” will always be with me. But now that my apartment is cleaned up, I have chosen to decorate it with some of the prettiest things I can find. The nicest of my treasures have been the flowers and orbs I found. I got the idea for orbs from my Christmas tree: some of the balls did not have a Christmas theme, and were labeled as “orbs” or “spheres” in the catalog. I decided to leave the prettiest ones out, and I bought ornate bowls and baskets for them. They are placed in various parts of my apartment easily seen from wherever I sit or rest.
During my cleanup, I found several vases left over from flowers sent to me over the years. I bought gorgeous artificial flowers and stones, and put them in the vases.
All of this makes a huge difference in how I feel when I am at home. Finding beauty takes no effort behind my front door anymore, and I am more at ease.
Oxygen. It’s a wonderful thing. We need it to live. It was the very first drug we learned about in nursing school. A drug, because an order with specific parameters is often placed for patients in your care. It is used to treat a problem.
Like anything else, too much oxygen can be dangerous. Free radicals and toxins will be released, and will damage you. We see this in preemies in neonatal units: they can go blind from too much oxygen. If you have severe lung disease, the carbon dioxide level in your blood may be chronically high. This happened to my mother as she approached the end of her life. Your brain learns to stop looking at high carbon dioxide to stimulate breathing (which is what drives respiration in healthy people). “CO2 retainers”, as we call them, rely on hypoxia to prompt breathing. Administering too much oxygen to a person with this condition will shut off respiratory drive.
You can indeed overdose on this wonderful thing.
Then there’s the opposite problem: not enough. As I type this now, I am recovering from scooping the litter box. For some reason, this task is very demanding.
Last Monday, I had a much more serious incident. I’ve been dealing with chronic laryngitis and a partially paralyzed vocal cord for several years. The laryngitis had gotten markedly worse in the past few weeks, to the point where I can’t carry on with my comedy routine or my YouTube videos. It is difficult to communicate with patients, especially at the end of the shift, because of the dry hospital environment. Monday, I lost my ability to speak altogether, and my ENT in Philly was able to see me urgently that afternoon.
I booked the 12:22pm train out of Elizabethtown, but got distracted checking Twitter and watching recaps and snippets of the Goo Goo Dolls’ shows in Las Vegas that weekend. It was suddenly 11:50, which meant I had to rush. My bad.
I felt fine as I raced east on routes 283 south on 230. I was grateful for every green light and irritated with every slow driver. I arrived at the train station with minutes to spare…only to discover there was nowhere to park. It was 12:20.
I had to park at Masonic Village. I could hear the train whistle as soon as I got out of the car, and I ran. I sprinted hard, large purse over my shoulder, coiffed hair blowing behind me, wrecked. The train rolled into the station. I pushed harder. And harder.
As I approached the tunnel, I felt the strength leaving my legs. My breathing suddenly turned to gasping. When I attempted to climb the very steep stairway up to the platform, my legs gave out completely and I had to pull myself up with my arms. i signaled to a woman at the top, who was looking at her phone screen. She gave me a puzzled glance, then looked back at her phone and got on the train. A conductor asked me if I was okay. I told him “No” as I mustered the strength to stand. My body was shutting down.
Once on the train, my gasps caught the attention of other passengers. My oxygen saturation was 90%, heart rate 122. Those readings were after I’d recovered a bit. My arms and legs felt heavy, and I began coughing. It dawned on me I should never have boarded the train but should instead have called 911. You don’t think straight when your oxygen level is low. I was as close to passing out as I have ever been in my life, and it was terrifying. For the rest of the day, I was spent. I prayed there would be open seats on the SEPTA bus in Philly, for I was too exhausted to stand up long.
Running for a train, riding a bus, and scooping a litter box should never trigger dread or phobia, but it’s the second time I had this experience with the train (the first time was much milder), and now I’m fighting fear again.
Most of the time, even when short of breath, my oxygen level is “good”, reading 95-98%. The reason why I still get winded at these levels is because of my heart. My scarred lungs, asthma, and (especially) pulmonary hypertension have placed great demands on the chambers and valves on the right side of my heart. So while I was struggling to suck in breath on the platform stairs, blood was flowing backwards due to a dysfunctional heart valve. My muscles shut down because my body was preserving itself. Not enough oxygenated blood was getting through to the left side, where it goes out to the body. My muscles and gut were starved of the good stuff.
Scooping the cat litter requires bending at the waist for several minutes. This causes an increase in blood flow to the heart and, in my case, causes venous pressures to shoot up. I see spots and rings in my vision, and I feel a lot of pressure in my chest. I then become short of breath and have to sit immediately.
In summary, my lungs and heart have had a very bad week. But I draw on the inspiration I got from the Goo Goo Dolls’ “Boxes” album again, and I am reminded there will be times when I must adjust to new normals. Whether these incidents are indicators of my condition worsening, or simply a rough few days, I choose to keep moving forward and do the things I do. Even if I must limit those things to sedentary activities ( like working on my novel, or blogging). Amazon’s Alexa helps me with the housework, telling me to stop and break every twenty minutes. I refuse to cave into fear. The “So Alive!” tattoo on my shoulder, the “Help people. EVERYONE!” tattoo on my right forearm, and the dragonfly on my right ankle are doing their job to help me push through times like this. I’m still very much alive, I’ve chosen to reach out and help people despite feeling crappy, and the dragonfly reminds me I am resilient and strong.
One day, you will likely see me with an oxygen tank, riding a scooter in the grocery store. A tough thought for a multi-marathoner, Appalachian Trail hiker, and regular Gold’s Gym member. But I will, as John Rzeznik sings in “Long Way Home”: “Light up the darkness/take what you’re given/it might be frightening/but it’s amazing”.
Frightening is an understatement. But as Joyce Meyer teaches at her conferences: “Do it afraid”. Because by pushing through while trembling, you become a conqueror.
Check out Joyce Meyer’s website for books like this one www.joycemeyer.org
Thanks again for reading my blog and visiting these pages. It means a lot to me. And feel free to check out my So Alive Project Facebook page. I also host a life coaching website and YouTube channel called the Pragmatic Princess (www.pragmaticprincess.com)
The past few weeks have been tough for a lot of people. Hurricanes, acts of terrorism, and wild fires have dominated the news. The shooting in Las Vegas has been particularly upsetting for those of us who are concert goers and music fans. All of it has been very stressful.
It is very easy to get caught up in negative thinking, not only in the face of massive disasters, but in our own personal struggles. My mind wants to go in that direction all the time. No matter what efforts I put forth to be kind and to help others, negativity is always in the shadows, waiting to step through any crack and take over.
Depression, addiction, and emptiness have been my constant companions, even before I was diagnosed with my two incurable diseases. Depression itself is a disease, perhaps even more destructive than the physical ones. It sucks my energy daily, and I have to choose to fight through it every day.
Being “so alive” is a choice. It is a mantra I have to repeat to myself each day. The past two weeks have brought many new challenges I didn’t need, revealing to other people some very embarrassing things I’d kept hidden, and being labeled. I reached a new low again. Every time I think I have hit bottom, another bottom manages to appear. Still, the remedy for handling my dark fears and emptiness is to reach out to people. Not to get attention or be needy, but to help other people in some way. Feeling down? Send a donation to help the victims of the Las Vegas attack. Tempted? Hold the door open for the upstairs neighbor and say hello. Frustrated? Go online and encourage someone in the recovery chat room. Pet some dogs and cats at the shelter. Get out of your own way. Get out of your own head.
Helping people is a way of paying it forward and moving it forward. It can pull you out of a rut and keep you going. You will see you are not alone; we all suffer in one way or another. As long as you are alive, you have a place, and you are of value to other people. At least that’s what I must remind myself to think about each day.
This day has been a real challenge. I knew it would come, and I thought I had prepared by making sure I had many goals and projects to fill in the hole that would be created. I suffer from what is known as a “soft” addiction (“hard” addictions are alcohol and drugs). Soft addictions don’t get much press, and it’s often difficult to get help for them. People tend to tell you to “stop it”. What they don’t realize is “stop it” was the first idea that came to your mind when you realized you were in trouble. My soft addiction is compulsive shopping, and it got the better of me this past week. I went crazy, for example, in Target on Wednesday. I had a new credit card, and although I went in for cat litter, I tossed anything that jumped out at me in the cart. It made me feel wonderful and free. And out of control. I walked out with over $600 worth of stuff and a nauseous feeling. But I kept walking and took my stuff home.
I did the same every day until Saturday. I went to Michael’s for a memory box frame and I also wanted a videography how-to book. I came out of the store with Halloween masks, various items to create the memory box, and went to the bookstore. I did not find anything on how to shoot video, but emerged with several how-to books on other things (blogging, WordPress, and Photoshop CC, and a bunch of book markers). $200 to that point. Then I crossed the street in search for a computer table. I found a glass art computer C table at Pier One Imports that was too much (should have just gone back to Target). Pier One also had a fancy witch hat to complete my costume, glass art pumpkins, and a lovely fall themed wreath for the door. Then I went to the music store for new strings for my 12 string guitar. I managed to stick to that one item, but all the way home I thought “This is ridiculous and needs to stop”. I immediately went online and began SMART Recovery…again.
I think what is wrong is that the Goo Goo Dolls’ tour is ending tonight, and it served as a wonderful and much needed distraction for me. I had grown close to the fan community, chatting online with them nearly every day since tickets went on sale in February. There was the anticipation of the tour, the meet and greet in Boston, and the release that comes with a good night out. And of course I got to indulge my “Johnny and Korel” crushes. It was a pleasure to see those two so often.
The experience of the tour made me enthusiastic about life and increased my positivity and mental energy, despite being diagnosed with a new–and also incurable–condition as it was all happening.
Then the fan activity on social media began to slow down. I knew this would happen. Last December, when their tour ended, everything Goo Goo Dolls related went painfully silent. As a new fan, I found myself scrambling to keep the feeling going. And I failed. And the dark feelings I have to fight every normal day returned with a vengeance. Maybe they only seemed darker after getting a glimpse of joy. And maybe my shopping binge went out of control because of the anxiety of knowing my distraction will once again be gone after tonight.
I not only suffer from pulmonary hypertension, fibromuscular dysplasia (the newly discovered one, which I may have had for “a decade” according to doctors), and chronic pain due to neuropathy; I live alone and feel invisible and have to self-motivate all the time. That gets exhausting, and there are days when I am not up to the task. The negatives of life come barging into my mind, often driving me to tears or leading me to stay in bed for days. The thought of no more Goo Goo Dolls shows (perhaps ever, because I don’t know when my illnesses will take me down or disable me) creates a sense of desperation and panic.
Shopping won’t help. Neither will the bottle of wine in my fridge, or the games on my Kindle, or any other thing I might get hooked on to make the miserable feelings go away. All of those things will make a barren life worse. The Goo Goo Dolls tour was also a crutch. And you know what happens to a cripple if you take the crutch away.
The key is to find another way of dealing with the barrenness, to fill the gaping holes with something productive, something that will help other people in some way. That’s one of the reasons I started this website. Maybe there is someone out there who will read this and understand how loss of something you focused on for months can serve as a trigger for unhealthy behavior. I have read about this phenomenon in books on negative thought patterns and addiction. But going through it is never easy. The next few weeks/months will be rough until I can latch onto something else to occupy my mind and put me in touch with people. I’ve done it before. I’ll make it this time too.
Long before I developed the chronic medical conditions I have now, I was consumed with other concerns. It doesn’t take a bad diagnosis to make you go into a tailspin. Anything can take you by surprise and send you reeling in a new direction, one you hadn’t planned to take. One that throws you for a loop. A road you avoided, but are now forced to explore. Examples include–but are not limited to–losing your job, filing bankruptcy, losing a loved one, economic downturns, betrayals, and natural disasters.
I honestly don’t know why I had depression and anxiety most of my life, and why it led me to do some of the things I did. Addictive/compulsive behavior got me into a lot of trouble, starting at around age 17. At first, I drank a lot. But when the partying stopped, other addictive behaviors took over. Like binge eating, compulsive shopping (to the point where I landed in bankruptcy court and faced the humiliation of repossession. I lost friends, boyfriends, etc., to this behavior). For many years, it was the primary issue I had to deal with. Even today, I battle many temptations and compulsions. Whatever restraint I had before my pulmonary hypertension diagnosis evaporated in the face of my eventual death. I stopped caring. Just like you can stop caring when faced with any crisis. Only now I have to deal with the PH, the FMD, and the consequences of my indulgences.
So what can be done in this situation? Medical bills on top of consumer debt on top of anxiety meds on top of overeating? Seems impossible.
I can be grateful.
Forcing myself to appreciate my life, to stand back and look at how good I have it compared to some people, and even at the time I’ve been given beyond what I thought I would have, takes my mind off my negative thoughts.
It’s hard to be grateful in the midst of a crisis, when you are scared to death or feeling like you aren’t in control. But it’s a choice. Find something to appreciate. It may take some effort, but you will. If you have a dog, for example, pet him. Look at his eyes. Notice how he comes to you, how happy he is to see you no matter how dark you feel or nasty you have been. He doesn’t care. He loves you as you are.
Or consider the homeless people. When I went to Boston to see the Goo Goo Dolls a few weeks ago, I came upon a woman in the train station who was curled up in the corner with a sign saying “My name is Amy”. I didn’t read beyond that. She was emaciated, maybe 18 years old, pale, and quiet. She had marks on her face you sometimes see with methamphetamine use. I said hello to her, mostly to help her feel acknowledged and visible. She probably feels pointless, ashamed, and dirty. Regardless of Amy’s reason to be in the train station begging, she is worse off than me. I felt great compassion for her, drug addict or not. Though I was still floating and happy after meeting John Rzeznik, Robby Takac, and Korel Tunador (and several others who work for the band, and members of the opening band as they passed the line), I stopped for a minute to consider Amy.
Of course, I can easily spot people in need and am much more open-minded after a good experience. When down, I have learned over the years that acting like I care makes me care. Acting grateful makes me grateful. And that changes my entire outlook. So each day, no matter how I feel, I choose gratefulness.
