I have lived the hell of transverse myelitis for two years now, and so it seems right to give healthy people a few tips… things I wish I had done when I, too, thought I was untouchable.
1. Attend every social event. After symptoms set in and you are sitting in bed, you will wish you could crash that party! If you have the energy, go. Support your friends and family. Be in the moment. People will embrace you… when you get sick and re-re-re-schedule plans, some won’t stick around.
2. Plot your new work fate. You, striding around the office, engaging and smiling until the record skips. When you become unable to sit upright you’ll wish for time to rewind so you can consider, without pressure, your new work life with chronic illness.
3. Be physically active. You likely have a body not plagued by nerve misfirings and random, nonsensical betrayals. Take care of it! Do it for the patients who can’t do it for themselves! Be fearless on that mountain bike, park in the last row. Hunt for tarantulas like I did one summer! Become the best version of yourself.
4. Purchase a disability insurance plan. I mean it. Right now. Put this article down and take a moment to set up the required $35 or so monthly payment. When you get sick you will never regret it.
5. Pay down on bills. Your car, credit cards — make deals and settlements (if you need to). Plot your finances. Build your savings. Two hundred dollars may mean making the bills… or not.
6. Don’t burn bridges. You never know who you’ll have to call. So, get comfortable calling. You are not demeaned because you need a hand with household chores. You are a person requiring assistance. No one can make you feel bad about it… but you. Embrace this way of thinking. It’s vulnerable and powerful!
7. Get honest about your relationships. When you move from an I’ll-figure-it-out-myself-conquer-the-world stance to I-might-never-be-fun-again, you better get right with your significant other. Tell yourself you are worth it. That you seeking help is no different than anyone else. Similarly, recognize taking care of another requires dedication, empathy and compassion. Give your support system kindness… and a break.
8. Travel whenever, wherever. Hotel getaways, last-minute airline deals. Go! Now! Make memories in foreign locations, take pictures, hold onto moments. After you are sick, days and nights may blend together and turn into year-round cabin fever.
9. Practice a healthy lifestyle. Too much fat, processed anything, cigarettes, an overload of alcohol, a sedentary life — nix it all. Post-diagnosis, you will sell your soul to restore your health. Solidify new habits now. If you don’t get sick, all the better.
10. Align your spirituality. Get centered in your head and heart. When you are unsteady physically, spirituality permits you calm. This peaceful consciousness will soothe you when you cry for what you’ve lost and when you ponder unbidden changes. Explore the energies of the universe, or accept non-existence. Work to find closure.
11. Listen to your body. When you need sleep, go to bed. When you’re full, stop eating. When you sense a cold coming on, improve your self-care. Tune into your body. Are you nutrient deficient? Predisposed to genetic conditions? Learn your family history to manage risk factors.
12. Discover a new passion you can do sick or well. Do you like adult coloring books, macrame, reassembling engines, what can you do to prevent ruminating on your disease? Whatever you decide, be certain it’s compelling.
13. Prepare your responses. My inbox overflowed with info on supplements, shakes, elixirs, oils, everything. Too much information froze me. Be unafraid to tell people how much you appreciate them, and that you will reach out when you’re ready. Remember, people extend themselves because your sickness breaks hearts.
14. Figure out an anger outlet. We make plans, go to school, pick up hobbies, RSVP. Then illness uproots everything. The loss of authority is infuriating. Processing a new reality is taxing, so allow your complicated emotions without self-beratement. It will cleanse you.
15. Don’t use up your tears. You will have many hours of crying into your hands, your pillows, across the desk from your boss, on the shoulder of a co-worker, against the chest of your beloved. You will weep until your nose is stuffy and your eyes throb. A difficult diagnosis involves grieving. It’s OK to surrender to it.
16. Get household repairs done. Pre-illness, I dabbled in home improvement. Post-illness, I pick my projects thoughtfully, because if I can’t finish them, they become my fiancé’s responsibility… as has happened, when I’ve lied to myself about my limitations.
17. Laugh at yourself. If you take your condition too seriously, you might never know lightweight bliss again. This is your opportunity to practice levity, to appreciate hysteria born of pain. Your learning is meaningful. Chuckling while trying to puzzle out the new you awakens humor in others and makes life more comfortable.