I've been saying, and thinking, that a lot lately. " The hardest thing has been....". The truth of the matter is, it's all hard.
The incredible support I have received has been a God sent. I really am blessed with an incredible support system of friends, family and colleagues.
I've decided to try and pass that on. By sharing our story, trying to be candid about what it's been like.
Dealing with any serious illness, terminal or not, can be very isolating. The first reaction appears to be to withdraw, kind of a circle the wagons mentality. No one likes to be the bearer of bad news so you stay quiet. You make small talk with friends, smile when you're supposed to. Be a brave soldier, keep that stiff upper lip. It's like you're alone in how you feel or what you are trying to cope with. But you're not. When you do open up, the stories you hear from others are amazing and inspiring. Stories that help you deal with your situation, give you hope. You can see in another person's eyes when they talk to you that they really do understand and have been where you are now.
Almost two months have passed since we got the news he probably has ALS. That's hard, probably. It's one of those things there isn't a test for, you rule everything else out and wait to see what or if symptoms progress. And they are, or so it seems. Finding out how much the medical profession just doesn't know isn't easy. It's frustrating, stressful and confusing. We all want answers and sometimes there just aren't any.
Trying to wrap your head around, "a 50% mortality rate after two years, five?", is craziness. We don't come with an expiry date. It's possible he will out live me and we could have decades together. The odds are just heavily stacked against it. Trying to make sense of that, to not have it consume your every waking moment is next to impossible. Someone has set the clock ticking. I don't want it to be like that. I don't want whatever time we have left to be only about his illness. It will make its presence known anyway. I want to be able to enjoy whatever life there is given to us. To be grateful for what time we have, rather than angry and bitter for what we don't.
It's hard that the world keeps spinning, doesn't stop and give you a chance to catch your breath or get your feet under you again. Laundry still needs to get done, still have to go to work, bills need to get paid. There are all these things to be considered and incorporated into our new "normal". I miss our old "normal". It's hard to take pleasure in the everyday things I used to enjoy, to see the point in bothering with it.
Being strong and supportive is difficult. I've broken down in front of friends, doctors and co workers but been the shoulder he needs to cry on. Put a smile on my face to ease his fear, then cried when he was asleep. Been the voice of reason. Reassured him it will be okay, I'll be here. You won't have to face this alone.
It's hard being on opposite sides of taking care of your self. I'm the holistic, whole body, drugs as the absolute last resort. He's the magic pill, psycho therapy is crap, give me the drugs now kind. Keeping quiet, ish, when I believe he is actually making things worse isn't easy. But it's his decision, his health, his responsibility. Very hard not to push what I believe.
I feel guilty. Guilty that he still makes me mad. That there are days I don't want to rush home, that I just want a break. Guilty that I miss sex. That's right, I said it. I miss it a lot. Guilty that I still want to laugh and smile and have fun. That I'm okay and he's not.
I worry, about everything. His health. Money. I don't ever want it to be the care we can afford as opposed to the best care available. Him being alone at the house. My ability to cope. His ability to cope. Getting our things in order. Are we making the "right" decisions? Is this the best way to deal with this? Are we being smart? Chose now while we still can before choices are made for us. Everything.
There are a few things I find especially hard to deal with.
His loss of hope. He has gone from an always out and about, laughing, singing, annoying prankster to hardly leaving the house, spending entire days in bed. The change is so pronounced. I'm who he turns to for solace. I get the tears, the silence, the constant litany of complaints, the," I don't have long left". It's heartbreaking, frustrating and maddening all at the same time.
The loss of my equilibrium. This is always in the back of my mind. Was this the last summer we had while he could still walk? Will he see my 50th birthday? Will this be our last Christmas where he's healthy? It sometimes feels like I'm saying one long goodbye to our life together. It makes me crazy. I don't sleep. I'm laughing one minute, near tears the next. Snappy. Short tempered. Quiet. Want to talk. Don't want to talk. Sick of talking. Can't help but talk about it. All depending on which minute of the day you happen to catch me. I can't seem to find my balance or get my thoughts in order.
Finding out you have no clue. I am so far out of my depth most days, I can't even see the shore. Everyone keeps telling me it will get better. He'll snap out of it, we'll adjust. Okay, maybe. But he's worse now than when he found out. Am I helping him by not pushing? Physically, he's still walking, breathing, swallowing, talking all on his own. Emotionally he's paralysed. Won't leave my side. Is he really much farther along than I think or is it fear and depression taking it's toll? I don't know and I don't know how to help. Ultimately, I can't help. I can't take this away, can't make it all better.
It hasn't been a long time. Coming to terms with a terminal diagnosis? Let's not kid ourselves here, that's what this means. Strangely, facing that, the very real possibility brings a certain... clarity. I'm not going to call it acceptance or being resigned to it. I don't really have the words for what I'm feeling. A sense of purpose maybe? Hoping that I can put aside my fears and sadness. For this time, I can be the strength he needs when his is flagging so badly. That I'll do what I can. This is his journey to make but I can make sure he doesn't walk it alone.
I have hope. There is still living left for us to do.