My heart goes out to all people who live with a chronic, debilitating illness day after day. Those illnesses that keep them from being able to enjoy life as the rest of us who take our health for granted do. And those of us granted with the graces of good health need to learn to have a bit of compassion for those who endure pain and disability day after day.
Shawn has an illness called Cyclic Vomiting Syndrome (CVS). Sometimes I think the diagnosis is just a symptom of something underlying that has yet to be discovered. And unfortunately that leads to thousands of appointments and tests to try to determine what might be causing it. Just in the past 2 months he has seen his primary twice, a rheumatologist, cardiologist a few times, hematologist, psychiatrist twice, and chiropractor about 10 times. They all order tests and new meds to try. And each appointment, each test, each result leads to more appointments and more time and stress. But never any concrete answers. Just more questions. The blood work is always not right. The tests always come back positive for something. New questions, new meds, new diagnoses. But nothing concrete with concrete treatment that will help him. Just when we think we are figuring things out we end up back at square one. He takes a handful of pills every night and half the time he can barely choke them down. One says he has an iron overload called Hemachromatosis that is attacking his organs. Another says he might have a rare adrenal tumor based on his elevated metanephrines. What are they doing about it? More tests, more appointments or here. . ."try this med and come back in 6 months." This week the psychiatrist (who has never heard of CVS) decided to take him off the one and only stomach med that has helped somewhat and put him on an anti-depressant instead. "Try this" he said. And viola. . .the next day... he is in the worse episode ever.
CVS has to be one of the worst chronic illnesses someone can have and has to be one of the most harshly judged. Imagine having the worst stomach virus of your life or intense food poisoning. Now imaging having that bug everyday for 10 days straight. And just when it starts to pass and you start to feel better you have the side effects of being sick for 10 days, dislocated and fractured ribs from intense vomiting, extreme pain whenever you sit from the constant diarrhea. Weakness from not eating much of anything for 10 days. Now imagine trying to function normally with employers, friends, family and having them grow annoyed and irritated with you for your seeming irresponsibility or unreliability. But you continue to try to put on your best face as if nothing is wrong and you feel great. Which leads to more judgment because - "he certainly didn't seem sick when I talked to him." Or "It must all be in his head." Or I love this one, "He should take better care of himself."
Then there are the moments when you are episode free for a few days or weeks at a time and you grow optimistic that you have turned a corner with the illness and you have somehow found a formula or medication that is working. You carefully follow whatever seems to be working and you gently step through each day thinking, "Maybe I can lead a functional life. Maybe I can start to make some real income. Maybe I can have a real future with my girlfriend."
This is the time when Shawn took the brave step of starting his own business. We purchased the necessary supplies, advertised on Facebook. Booked several jobs that would get him through the summer. Things were looking up! He was able to do a couple of small jobs and got paid. Although there were a few bumps in the road - it still seemed possible and manageable. Then he booked a big job and a few days in. . .Wham! Hit with a major episode. And when he is in an episode he does everything he can to fight ("Fight, fight fight" is a frequent text message back and forth between us). He does as much as he can to work, but even at the job he can only work 20 or 30 minutes at a time before he is hit with an attack. Again - imagine your worst stomach bug and then making yourself go to work and work through it. Why does he do it? To make the money to support himself and his son of course, but more than that to not disappoint the customer. To try to remain reliable and to maintain his reputation. He tried his best to finish this job and he was determined. He can sit and imagine exactly what needs to be done and knows that he is the most talented to do it right. And he tries to convince his body that it is going to get better so he can get it done. But the body has it's own ideas.
We reached out to the customer and explained the situation. They had not paid him a deposit so it wasn't as if he was taking the money and not completing the work. And he was communicating daily about what was going on. He kept trying to increase the time frame and at first they were understanding about the illness. I even reached out as I knew them from town and offered the alternative to pay for what was done and hire someone else to finish because it was truly unpredictable when he would be sick and when not. But they kept him on - until they didn't. And then they didn't hesitate to lay into him about promises made, About the amount of excessive time spent on prep (if the prep isn't done right the paint isn't going to last. Anyone that comes in and slaps paint on quickly is not doing the job correctly. He honestly does know what he's doing and if not sick the job would have been done perfectly and had lasted for years and years). But they were frustrated and I get that (so are we!). He had put many hours of work in and bought his own supplies - many of which were not anticipated because of the amount of extra work that cropped up as he went. But this illness does something to your confidence as well because people feel like they can criticize you more openly for some reason and discredit your professional expertise. And instead of arguing he tends to just accept the criticism and it sinks deep into his soul. . .leaves him despondent and hopeless that he can ever do this.
But the thing that bothers me the most, is they tried to call him out on taking a day trip, based on seeing posts on my Facebook that we had spend a day on Nantucket together for my birthday. Because I guess if someone feels well enough to go to Nantucket then they must not really be sick? This was a cruel, heartless thing to say. Instead of a "thumbs up" for putting the illness behind him for one day to try to live life a little and to celebrate. To try to not think about the disease for just one day and try to make some memories. Instead of saying "Good for you" they chose to chastise him. And did he feel good in Nantucket? No. He slept on the boat all the way there. We parked him on a bench when we wanted to walk a far distance. He visited just about every public restroom there was. He slept next to me on the beach, holding hands with me. Compassion please. Stop judging.
Judging someone based on what they post on Facebook isn't fair. Most people focus on the positive parts of their life to post. Think of it as a photo album. You go on vacation and take pictures in front of majestic things and everyone has a smile. Do you take pictures when the kids are cranky and hungry? Of when you and your spouse are fighting over directions? Of when the luggage gets lost? No. Why? Because the smiling faces are the memories you want to focus on and remember. Facebook for most is no different. These are the moments to remember and cherish. Don't think of the poster as lying or being untruthful and trying to make their life look golden. If you are close enough to them then you know the real story behind the pictures. Just like I am not going to post about Shawn's illness on Facebook. But if you know me and know us. ..then you know the truth.
If it had been a cancer patient who took a tropical vacation after undergoing their horrible treatment there would have been 500 likes on their Facebook post. There would have been Go Fund Me pages set up and meals made and delivered. Not one person would have said, "Oh he must not really be sick if he can go to the Caribbean." Not one. Why? Because cancer is socially acceptable as awful. Chronic, unexplained illnesses are not.
And please don't think I have any resentment or hard feelings for cancer. I have lost many (too many) family members to cancer. I have many close friends and family members who have fought it and won. I have made many meals, and contributed to many Go Fund Me's for acquaintances who have had to battle this horrible illness. But what I want to hit home is there are so many other people out there that deal with illnesses that there is NO end and no cure. It just goes on and on, day after day, no end in sight. They deserve your compassion and understanding as well.
Yesterday I was riding with my daughter to move her into college and Shawn was following in my car. I was talking to a friend on the phone when Shawn called in on the other line and I said I needed to take the call in case he was sick and needed to pull over. And my friend said, "Oh you are still dealing with that?" There was a pause on my end. "Um, yes. It's chronic. We will always be dealing with it."
And sure enough he did need to pull over. We pulled in next to him and he barely made it, opening the car door and puking on the ground. And this happened repeatedly throughout the rest of the day. After another hour of driving he couldn't do it anymore and we switched spots. He became passenger in Melanie's car (her first time driving such a long distance in the mountains with no cell phone reception wasn't going to be done solo in case we got separated). I drove and led them and he slept, thankfully Melanie didn't need him. She stayed with me and managed the mountains like a pro.
The rest of the day he slept in the back seat of my car with the windows down while Melanie and I moved her in. We went along with the day as needed, but my mind wasn't far from him and his needs. I would check on him frequently and find him sweating and shaking in the back seat, vomit on the ground all around the car. At the end of the day I asked if he wanted to come see the apartment and he did. He dragged himself out, put on a brave, albeit pale face, and went in and took a quick look, met the roommates, used the bathroom and then gave me a pleading look to leave. We were supposed to stop halfway home to visit with friend who had invited us to stay over and then attend their party the next day. But along the way with him still vomiting and looking like death he pulled the cord. He texted them and said we couldn't make it. We came straight home and he went to bed and hasn't moved since. I have checked on him frequently and he is breathing. Still sweating. Still shaking. Vomiting less but hasn't stopped. I check because at some point he will hit the level of dehydration that we can't make up for at home and he will need to go to the hospital. Not there yet. But getting close if it doesn't pass soon.
I write this with tears in my eyes. Tears for the grief of living with this illness. I'm not the one vomiting and sick to the point I can't function. But I am watching someone I love very much go through this and even though I do everything I can to help him. THERE IS NOTHING I CAN DO. Nothing. And that feels terrible. Helpless. I am someone who has always been able to step in and fix a situation. Somehow help to make someone's life better and more functional. And even though I have put him on the track to all the medical experts I can find (and we are waiting for an appointment at Mass General with a CVS expert), he is only getting worse. Not better. No matter what I do. And there is a grief and sense of loss as well. Loss for the life we should be living together. The dreams we have of traveling to Ireland, getting married someday, fixing up this house so that we can sell and someday buy our own cute little house with a big backyard for the dogs to run and play. Shoot I just want to be able to buy kayaks someday and spend a day on the peaceful water, just the two of us. We got hints of that early on in our relationship and I want that back. I want him back. And therefore I will not stop fighting for him and and with him. He will feel better and we will have that life we want. I won't give up because his life depends on it.
And if you see us out living life then applaud him. Give him a thumb's up. Don't assume he must be fine now. He's just trying to enjoy the small, disease free moments and live a normal life. Those are the moments that give fuel to the desire to stay on this earth and not give up.
Update - as I was editing this post I heard moving around upstairs. He comes down with a little more color in his cheeks. I ask, "were you able to keep some water down?" He says yes he had a bottle and it has stayed down. The worst of this one is passed. No hospital. . .this time. He says to me, "Is it pajama day? Because since I've gotten up, knowing there was no Labor Day parties for us today, I spent the morning cleaning, paying bills, writing this and not getting dressed. I say, "Why yes. . .it is pajama day and I reserved the Elton John movie from Redbox." His face lights up. That's it. . .that's all he needs today. Rest, movies, pajamas and unconditional love.
