I admit, there’s times I try to avoid getting too personal with this blog. But in the realm of rare disease, sometimes that line can be difficult to draw. Especially when one of your rare diseases is estimated at having a population of less than 350,000 worldwide & is predominately female. It’s estimated that our current online support group has a little over 800 women. Despite generalizations that women can be catty, most of us in this group play in the sandbox pretty nicely. Yet, it’s days like today that make it difficult to sleep.
One of our “veterans” fell. Now before people get all bent about me using war analogies let me make something clear. To me, veteran has always meant to be a term of endearment & respect, regardless if it is used to define friends & family who have served in the military, or someone who is a mentor to someone newly diagnosed with a rare disease.
In fact, Dictionary.com has this definition alongside a definition of a solider or someone who has served in the military. Defined as a noun meaning”
a person who has had long service or experience in an occupation, office, or the like.”.
The same site has this definition (#7 ) of the word general: “having extended command or superior or chief rank”.
I point this out because to those who don’t know, there is a debate waging on use of “war analogies
” in chronic illness, most notably in the realm of Cancer. Whether such analogies are accurate or appropriate.
I am not debating this tonight here. What I am doing in the middle of the night is penning a post about a personal issue for once, because I was sound asleep for an hour, but then woke right up. I woke up because I was having a hard time reconciling something that happened. I should be sleeping because I have to be up early for a test but my mind is just not shutting down because my mind is getting sick of processing losses. It’s had it’s fill for the moment.
I have lived with LAM
now for 12 years. I’ve known many of these women a long time. Some not as long. But there were women that when I was a “newbie” showed me that I could still persevere in the face of a then 5-10 year life expectancy. There were women, when I cheated death at the hands of LAM
twice previously that cheered me from the sidelines & listened to conversations I knew others close to me might not be ready to have or me to have with them. They were sounding boards & mentors & often had many experiences that were quite similar, yet still had hope & resillence in spades.
I watched some of these women go from higher to mid-levels of lung function, to lower, to oxygen, & sometimes to transplant & beyond. Women of all ages & walks of life. Yet there were a few that were always constantly adapting & making the most of things despite what seemed very cruel & scary limitations on the outside. That continued to give me hope. That bolstered my resolve to get aggressive & take that same approach to my own journey. Hopefully now, I give back & instill that in some women with “fresher” diagnosis or can at least offer solidarity to my remaining mentors by appreciating them & thanking them for the many nuggets I gathered from them & am applying now.
These women allowed me to ask as many questions as I needed to ask when I needed to ask them. Many still do. They never claimed to be experts, but sometimes dropped useful kernels of truth in helping to come to terms with my own loss of function over time. Even in bleak moments (prior to treatment during increasing frequency of hospitalizations) they helped me try & find silver linings when I had moments of bitterness so I wouldn’t stay stuck. Moments are inevitable, but chronic bitterness is a sickness I know I can & knowingly try to avoid.
So as much as I may try to maintain a friendly distance, I invariably grew close to these women over time. It stings like hell when one of them falls.
Someone who was there for me from the very beginning died today. She died of pulmonary hypertension she developed because of her LAM
diagnosis. She fought valiantly for 25 years with humor, grace, & realism.
This comes a few months shy of a year of someone who was also considered a “veteran” to many passed suddenly. I was also close to someone else
who I found out passed on 8/23 waiting for a transplant. I had a blog post about that but it was the only acknowledgement I could muster at the time.
It’s s**t like this that keeps me up in the night because I get angry. So much loss to adjust to, the increasing loss of function, increasing need for oxygen, increasing uncertainty & necessity for timing & transplant. The loss of the ability to work. The loss of friends. I admit there are times I have a lot of anger but I do my best when it’s in this realm to try & channel it constructively to use it to fight back. I often succeed but again, I am human. I can’t deny that some nights it gets the better of me.
Yes, therapy for terminal & chronic illness helps. Being open about death & facing mortality does too, but at times it just sucks, period & there’s no way to conceal the pain it inflicts. There’s sometimes no helping the pain other than just letting it out, period whether to people or to words on paper.
I don’t whine. I accept my situation for what it is & do my best to muddle through the adversity. But I (like some others in my community) do feel a sense of survivor guilt from time-to-time over things that transpire.
Why did treatment work for me for 5 years but not someone else? Why did someone get transplanted & get their life back in the face of such struggle for others who may not even get that opportunity? Why did I not need oxygen until I was at a certain level when women with higher function needed it earlier? None of these questions have any answers.
But all of this is an undercurrent that many people with rare & terminal illness fight behind closed doors in the wee hours. It’s not addressed & not spoken about. Someone hits a certain level of understanding over time wrestling with the question of one’s own mortality & coming to terms with losses of any degree, it’s true. But it’s done most often on their own time & by themselves. It’s a discussion that’s often avoided but should be had; even when it makes people uncomfortable.
So I throw a few peanuts to the elephant sharing my room tonight. It can’t sleep either. But I feel better acknowledging its presence than ignoring it & letting it suffer in silence.