Caregiver

Back before it turned out Lance Armstrong was taking steroids, when everyone still loved and adored him I read his book and he mentioned something in the book that always resonated with me it was that ” Cancer either brings you together or tares you apart.” He was referring to his first marriage and while I was just a child when I read that it resonated with me for some odd reason, but years later I would fully understand what he meant.

While not married to Matt at the time when he had his stroke I became his care taker, which to everyone whom has ever taken on that role you know how tough it is. I thought the role was temporary and for the most part it was, but I think the thing I never actually fully comprehended was just how much Crohn’s Disease played into my care taker role. In so many ways that would be the reason why for most likely the rest of my life I will cycle in and out of the caregiver role. I don’t think there is ever a way to be prepared for that role especially not in your 20s, but when it falls upon you out of the blue you step up to the plate and embrace it, as I did when I needed to.

However, I think few people really understand what the role means and encompasses and how little support there is especially for young caregivers. I believed the universal truth we all tell ourselves, at least in the United States, that we wont be caretakers until we are well past the heat of our lives. In my experience for older people there were a wealth of resources but for someone under the age of 50 not so much. There was no literature on how to navigate taking care of someone who is recovering from a stroke while working, going to school, trying to have some semblance of a social life and attempting to stay in shape. Not to mention that navigating the treatment world is a full time job and the hardest job I have ever had.

I would like to shine some light on what it means to be a caretaker. There are doctor and therapy appointments intermixed with hospital stays, treatment plans, research on the best doctors and the best and closest hospitals wherever we are and that means everywhere even when we are in a jungle in a developing nation and sometimes it means not going somewhere where there will not be access to good health care. It means researching the newest technologies and treatments to help those with chronic illness cope, holistic v conventional medicine or a blend of both? All of these things while working, going to school and having friends ask why you are not going to happy hour once again.

When my partner, Matt, basically hit the stroke jackpot for lack of a better term and had both an ischemic and hemorrhagic stroke I could never have imagined how much our lives would change. We would learn it was all caused by undiagnosed Crohn’s Disease, an autoimmune disease and one of two forms of irritable bowel disease. You never are cured per say from Crohn’s as it is chronic but you can go through periods of remission. The duration of which varies from person to person.

In a few months time I had learned that the person I was falling in love with had a long road to recovery from his stroke and also had a chronic illness that we would both have to learn how to navigate. In the beginning when I first learned about our new normal I though OK I’ve got this and sometimes I did, but on most days I existed somewhere between surviving and debating running away and never come back.

Matt had survivor and IBD support groups I had sorry expressions, empty sympathy and a whole lot of people pull away from me because they just did not or could fathom Matt and I’s life and did not want to. It was as if by not acknowledging what I was going through they could pretend it was not happening and I was just somebody who did not want to talk to them anymore when in reality I was just drowning and at the end of the day could not fathom picking up the phone to hear about anyone else’s life. I just wanted to get through the night to make it to the next day.

In many ways as a care taker the stroke recovery was the easy part because it had a natural ending in which Matt would either begin to get better or he would level out.  We were extremely blessed and lucky that Matt did start to show signs of improvement and was able to attend some of the best therapies in the country. He has made almost a full recovery which is a pure miracle that we are thankful for every single day and honestly he continues to get a little bit better everyday almost 4 years out.

However, the part that has not been very tough for both of us is managing a chronic illness and for me figuring out how to be a caretaker to someone with a chronic illness.

Last year around this time Matt experience his second flare and I was catapulted back into the role of caretaker. I can honestly say that there was nothing that could have prepared me for it. I was at a juncture in my life where it felt like we had finally made it out of the woods after a long, arduous journey and I did not want to go back, but as time went on I knew where we were headed and if I am being honest there was a moment where I resented it. It is hard to shift the mindset from hey were young people finally getting life figured out to hey my partner is in the hospital and when he gets out I will have to be on high alert to the fact that we may need to go back at any time. I think it was the first time I allowed myself post acute crisis of the stroke to process the seriousness of autoimmune disease and what it honestly meant to have a partner with a chronic illness.

I have learned a lot since then and in many ways embraced the role but that does not mean there are not days when I wake up wishing I never knew what an auto immune disease was. So for all of you out there young or old in the caretaker role I feel for you and know that you are not alone and if you ever want or need someone to talk to or bounce ideas off of I am here.

Loss…

66A433B4-8399-40CC-80C0-878D876D5ABC.jpegLoss… some people are blessed and never really know true loss until they are well into adulthood. Others seem to be surrounded by it at a young age. I unfortunately am one of the later. At the ripe age of barely 16 I lost my mother. This is something I almost never talk about and something I hardly admitted or told a soul until everything happened to Matt. I fully believe that almost losing Matt forced me to fully process everything in a new way and I started to make peace with it.

Butterflies symbolize resurrection, a spiritual symbol of life after death. I think that it is no twist of fate that this summer as I ran my normal boardwalk route, a beautiful Monarch butterfly followed me, landed on my nose and swarmed around my head. I fully believe that was my mother telling me while not physically, spiritually she was there for me in one of the most trying seasons of life as I navigate what is next for me in my career.

I thought of her telling me the story of my premature birth and how she had spent a late night at the office a month and a day before her due date with me because she thought that then she would have a whole month to prepare for her new daughter. Surprise! I came approximately 12 hours later, when she went to the hospital in pre-labor pain, they lost my heartbeat and immediately induced. She would always say I was a pain in the ass from day one in her perfectly sarcastic way laced with her Philadelphia accent. As that butterfly fluttered around me circa mile 3 I thought Mom, are you showing me how you can be that pain in the ass too and laughed hilariously as we played and harassed each other for the next few miles. The butterfly would flutter in, I would look at her, she would fly away, repeat. Just like old times driving each other insane but still filled with so much love and joy.

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Begin Again

As much as Boulder was our home, after Matt had a stroke and we went back, we had to accept the fact that our life there was not the same. You have to keep in mind that Matt and I had been dating a mere 4 months when shit quite literally hit the fan so we were getting to know each other, but we were not there yet. I knew tidbits about his family and had met his friends and vice versa, but we did not know the inter-workings of each other and guess what now we were roommates and one of us did not communicate well, talk about a relationship shift.

Matt struggled with the fact that time is everything in stroke world and he had been showing signs of a stroke for days. He thought that if only his family had taken him to the hospital sooner he may have had a very different outcome.  A minute can mean the difference between being saved with few deficits or having a long road to recovery or in Matt’s case the difference between being administered a clot busting drug and being ok or having the clot bleed and having brain surgery.

I encouraged Matt to take ownership in his role in all of this. He  should have listened to me when I said it sounded like Crohns Disease and gone into the first urgent care center saying I think I have Crohns instead of lying about how long he had been having GI symptoms. I also pointed out that if he had not been living such the party lifestyle he would have never thought profuse diarrhea for weeks was normal and would have gotten help after a week or two of it. I also prodded him to talk to his friends about their drug use and what he now knew about all of the complications that happen from them.

Instead of his friends reevaluating their life choices they decided it was just Matt’s bad luck and it could never happen to them and even crazier than that they assumed Matt, who let me remind you could hardly speak and could not read or write, would be back partying with them in a few months at Red Rocks.

I listened to them talk to Matt about when he had to partied hard at various shows and rolled my eyes as I thought ahead to the next days round of doctor appointments and therapy. They had no idea because they chose not to have a clue. It was easier for them that way because they did not want to leave that lifestyle behind, but they also were not ready to realize that Matt had. That version of him died the night he had his stroke and had been slowly dying even before that as he was trying so hard to transition away from all of that.

Matt did not have a phone at this point in time because he did not want to pay for something he could not use and this right here was how it became so easy for me to be the “reason” he had changed. I read Matt every text and handed him my phone every time someone called for him, but he rarely wanted to answer and when he did it was always that he was busy. Naturally, this was seen as me “keeping him from his friends” which is hilarious to me because if you know Matt one of the things we have in common is that there is no telling us not to do anything. I was warned by his neuro-psychologist that this would happen. I was the easiest one to blame, but it was not easy for me at all. I hated being hated for something that obviously was not my fault. How had I made him have Crohn’s Disease or a stroke or not want to hang out with them as much? The reality was his reality had changed and their reality had not and rather than accept and adapt to the new Matt they fought it and blamed it on me, inevitably driving an even larger void between them and him.

This being said when it was time to move onto our two month stay in Chicago we were more than ready. It was the fresh start and change we needed. I was beat down from care giving and dealing with his friends and my friends and our families and my class and the Praxis test. I wondered if I would ever have any semblance of a normal existence again and Matt clung to Chicago as his hail Mary in his recovery.

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2014

IMG_0753.JPG2014…. One could say this was the year that began the renaissance within me. It started out with a bang and by bang I mean I had finished 2013 with starting a new job, the one that would do me in with cube life, following an epic breakup after deciding to spend 2 weeks roaming around India and Nepal, where I did in fact get so malnourished that my brain ceased functioning and I drank the water. Yes, I know this is traveling 101 but tell me how you feel after eating nothing  but a Luna bar a day for 1.5 weeks, trust me when I say you are no longer able to think coherently about anything. Continue reading “2014”