A Perfect Storm of Perseverance

Origami-craneWe all have someone in our lives who is just a bit more unique, more challenging, and more special than most others. For me, that person is my oldest brother.

He is the Perfect Storm of health challenges and disability. When he was very young, he developed a brain tumor. In those days, medical technology was not as advanced as today and in order to remove the tumor, his optic nerve was severed. Related issues with other tumors and years of medications has led to the fact that his disability has become the least of his issues. You name it, he struggles with it – pituitary issues, diabetes, short-term memory loss, arthritis & vertigo which has decreased his mobility, severe sleep apnea and bizarre issues with his body temperature and sodium levels – truly the Perfect Storm.

About ten years ago, he moved closer to me. At the time, he was still fairly independent. As time has progressed, and his health has continued to deteriorate, I have become his primary contact, Power of Attorney, Health Care Proxy, and middle-of-the-night-phone-call-recipient.   As so many of you out there know, being the primary caregiver can be exhausting, stressful and frustrating. It is like having a second full-time job that is full of emergency deadlines, scary decisions, aggravating red tape and fear of the unknown – all for no pay. But we do it because someone needs us.

Amazingly, my brother throughout his life has found a way to laugh, to make puns, to sing, to master the art of origami, and somehow, to not give up. When he was a child, the doctors predicted he wouldn’t live past his teen years. Quite literally against all odds, and throughout some very serious episodes in which we nearly lost him, he has proven us all wrong. Today is his 60th birthday.

With a twist of bitter irony, he is celebrating his birthday in the hospital. The whole family came into town for the weekend as a surprise — we had fun activities and gifts planned, but his body had other plans. We visited with him in the hospital and we took him a few gifts, but somehow the excitement fades when one has to open a gift and hand it back to the giver to take home, and when cake and ice cream have to come off the menu. Rather than having fun today, he is a blind man sitting bored and lonely in the hospital waiting to hear if he has to get a pacemaker. Even after putting on my pretend Super Woman Cape, and waving my virtual magic wand, I couldn’t make today not suck for him. We Real Women don’t like to admit this, but some things are just plain out of our control.

I talked to him several times throughout the day, and this afternoon he apologized to me for being down, frustrated and depressed. He apologized for not being perky and happy during a crappy experience. I thought about how any of us would feel having to celebrate a milestone birthday in the hospital for any reason, let alone with his issues. And I had one of those moments when my own frustrations and exhaustion over his on-going needs seemed to pale.

Tonight I’ve been thinking about what my brother has taught me over the years. I’ve learned to never, ever take our health and abilities for granted. I’ve learned patience. A whole lot of it. I’ve learned more medical terminology than I ever thought I’d need to know. I’ve learned how to be pushy and forceful when necessary to get answers. I’ve learned to be thankful for good days. And most of all, I’ve learned that no matter how bad a day I’m having, there is always going to be someone else who’s having a harder day with much greater challenges.

I’ve promised my brother a “do-over” birthday celebration when he’s out of the hospital. It won’t be as festive as what we originally had planned, but miraculously we will once again have an extra reason to celebrate: another day on this earth.




About Real Women

A "real woman" mom, wife, worker, friend, sister, daughter....
This entry was posted in age, birthdays, disabilities, family, Health, Helping others, Uncategorized and tagged , , , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s