Understanding.. What we want vs. What we can have

Recently my mom was very sick. She had a bout of food poisoning that knocked her out cold for 4-5 days and then had to be treated for colitis following.  It was a rough one. She has always been my number one supporter. Everything I have been through, she has been by my side, ready to defend me, fight the battles I can’t fight with doctors, insurance companies, collection agencies and anyone who questioned my silent illness( as many of us with chronic illness like to call it). She has always been there for me no questions asked. Of course she IS my mom that’s what they are for!  I never questioned her level of understanding of my disease because she has never given me reason to. But a few days after her stomach bug she gave me a call… She wanted to tell me something that I could tell she really wanted me to hear. Not just in the listening sense but truly absorbing what she wanted to say. She proceeded to tell me that when she was going through the nausea, weakness, shakiness, pain, cramping, inability to eat and more something just clicked. She said “for the first time I felt like I understood what it is you experience every day, I am not sure why now. I have been sick before but this time it just hit me. And … All I can say is I just don’t know how you do it, because it sucks! I would never want to do anything.  I would never get out of bed.”  She just kept reiterating over and over again “how much it just sucks to realize you experience this on various levels of severity every day”. This level of understanding doesn’t come often for those not in our shoes and even then it’s not possible for even those closest to us. There’s so many more things we go through psychologically that healthy people cannot comprehend until they go through a certain experience. It’s more than just the physical symptoms we experience. The symptoms that take away our ability to do all the things we want. The energy to be able to have a full week of work only to have a short weekend to recover and hope we can get enough rest for the week that follows.  The friendships we try to maintain but don’t have the ability to go out as much as we used to. The loneliness that creeps up on the nights we lay in bed watching Netflix alone with a glass of wine on a Friday night wishing we had company to rid us of the thoughts we can’t escape. The thoughts of what the future may hold and what may or may not happen next. We wish and hope for more time, more money to do the things we want to do like travel or not having to work anymore because we know eventually that ability will one day be taken away from us. What will we do?  How can I maintain the lifestyle I am comfortable in and not work anymore?  How can I give my child everything I want her to have and withhold the sight of the suffering she will have to witness me experience?   What if through all this I lose my self, who I am at my very core because I am just too weak to keep going?  Will I one day lose my voice?  Not my physical voice but my capability to for those truly hear what I have to say. Will those around me that love me treat me the same, remember me for me, or will they see right through me and only look at me as a patient? Can the level of understanding I want from others be maintained or will it be lost with everything and everyone else that is gradually taken from me by my disease?   So many thoughts to take in and as I said before unless you have had a similar experience it’s hard to understand what the experience is like. Lately I can’t seem to escape the thought that I am not getting out of life what I want. I have a job that pays me well.  I am comfortable but my career is not something I ever truly saw myself doing. I only started down this path because of my disease. Because I needed medical insurance and it was the only way I could affordably live the life I wanted for my daughter and myself whilst not going broke from medical bills and even then, when I started off, bills were taking half of my paycheck. I can’t shake the feeling thought that I want to do something more. Something meaningful, but can I do that with the big salary cut I would take and expect to be able to afford what comes next knowing that the older I get the worse my disease will get. It’s the line of true happiness and survival. When you have a chronic illness this line begins to blur and choice between the two becomes less and less of a choice.  How do I truthfully tell my daughter that she can be anything she wants in the world when I am not representative of that statement. Then I begin to fear life will let her down even more so if she ends up inheriting the malformed genes of her mother.  I feel as though with chronic illness you value life so much more but what we get out of it is so much less.  There are things I want to do that I can’t anymore.  I don’t have the energy to perform on stage as I used to.  I can’t afford to quit my job to do charity work, or environmental work that I have always wanted because I need medical insurance.  Not jus medical insurance but good medical insurance that will cover this the things I need.  I need a salary that will allow me to pay my medical bills without going into collections and still have enough to put into savings and towards my daughter.  All in preparation for the day I will need to file for disability and make next to nothing for it.  It’s not just the money either.  The jobs I really want take effort, that I fear I would not be able to achieve in a full time role either.  The dreams of a life I will never have.  I think to myself maybe I could teach, but could I really handle being on my feet all day?  When it comes to what we do for a living we have to weigh the options of what we want vs. what we can do and what we can have.  Sadly most of the time the disease will win in this case.  We have to practical about our decisions here after all don’t we?  Especially when there’s others to consider in our decision making.  Our kids for instance (if you have them). Life is full of trade offs for everyone.  It’s not just the chronically ill.  What most do not understand is that those trade offs for the chronically ill are not so much trades as they are straight up decisions based on our illness.  We don’t get a lot of trades.  One thing for the other.  For us it’s that we have to make this choice because we don’t have a choice.  And to reiterate the words of my mother “That just sucks!”. The list can go on and on of the scenarios we stress our selves out over every day. We have no control… No “say” in how things will turn out. No idea what days will be good and what days will be bad. What plans we have made that we will experience or that will be cancelled because we’re having a bad day. No clue as to how much time we have. In the back of our minds knowing our chances of living a long life are slim. Knowing we will miss out on things. I try to maintain the positive outlook the best I can.  I tell myself at least I cherish the special moments even more now and I try to let go of life’s little hiccups that may have frustrated me more in the past. But in a way I still feel like I’m only kidding myself. Giving myself a crutch of sorts to fall on to mask what I really feel. I question if I do it for myself or if I do it for others?  My guess is both. I think we probably all do this. The best we can hope for is a level of understanding.  I can’t explain it, but that call just gave me a huge feeling of relief after she said that.  It was kind of an “aha!” moment where I thought to myself “finally someone that’s not chronically ill gets it!”.  But look how long that took?!   I guess it just clicks when it clicks.  Not that I have ever had to hide what I am truly feeling from my mom, but I do feel like I can be a little more vocal and “real” with her now though.  I feel like I can really express to her that what I am getting out of life is not exactly what I want, but at least I can say it’s better than most and not be kidding myself… because it is.  Things can always be worse, and if it means that my life will not always be what I want it to be well then, Cest La Vie!  I’ll just cherish what I have now because eventually things will get worse and when they do that level of understanding will be needed more than ever.

~Just a Regular Sick Girl

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