“Let’s try to have dinner before the party. I could make something vegan and bring it. I can also come back from Northfield on Saturday and get you for the memorial. Also, if there are any jobs you need done, put them aside for us.”
This was the message I just received from my best friend from college who lives in Milwaukee and is driving to Minneapolis this weekend. We recently lost one of our good friends from college to suicide, and his memorial service is on Saturday. Her words couldn’t have come at a more perfect time. I have been feeling such a huge loss of support over the past couple of days. But this message has support written all over it, embracing me in so many ways. She gets it, and we haven’t even seen one another since last Christmas. We don’t talk on the phone, and she still gets it. What’s even more important is that her unconditional support and love shine through so easily that you can tell she knows who I am and what I need. No questions asked! I’m good at asking for help, but it’s always delightful when I don’t need to because it is offered first. However, my good friend would do this for anyone she knows is in need of help.
This is the kind of person I am too, which is one of the reasons why we are kindred spirits. I will do something for another in a New York minute. Due to my cervical dystonia, my options are more limited regarding what I can offer to those in need, but that doesn’t stop me. Because this is the nature of who I am, I expect that others are just as compassionate and will volunteer to help someone in need. However, since being diagnosed with an incurable neurological movement disorder 4 1/2 years ago, I have found that simply isn’t the case. Don’t get me wrong. I am incredibly grateful to my awesome parents, a few friends, and even a couple of acquaintances who have offered to help me over the years by giving me rides and doing the daily chores I can’t physically do at home. In fact, it is the two acquaintances who have consistently given me weekly rides for more than a year now: one to classes on spirituality and one to church forty minutes away every Sunday. They have allowed me to pursue my spiritual growth with like-minded people, which I never would’ve gotten to do without their help.
When you are healthy, you don’t think about how much it would mean to someone diagnosed with a chronic or terminal illness if you offered to bring them a meal, wash the dishes, or even vacuum the house. Having experienced both by having 39 years of “good” health, and now my incurable movement disorder, I will tell you it means the world to us.
Let’s do a little exercise. Sit in your favorite chair, get comfortable, and imagine you have just been diagnosed with a neurological movement disorder. Your neck is constantly spasming. Your head shakes back and forth, back and forth. There’s no way to stop it, so you’re stuck waiting it out. In fact, your neck may spasm the entire day and while you are supposed to be sleeping at night. You just never know. What about your chronic pain? Well, your pain level in your back and neck is typically a 7 all day long (but you’ve had even worse days ranging from 8-10), and you get chronic headaches that feel like someone is stabbing your forehead over and over again. You can’t hold your head up on your own, so it’s typical for you to need to lean against a wall when you go to a meeting or lie down, unless they have furniture that allows you to lean back on your neck pillow (which you can’t leave home without). Today, you are 44 years old. You can’t believe you’ve been sentenced to this incurable disease. That wasn’t what you envisioned for your life. You always knew you would work until retirement age, and then the world would be your oyster.
Ah, your dreams for retirement…The magical age of 63 was going to be your time to do all the life experiences you kept putting off those first 63 years when you were too busy working at night and on the weekends. You planned to do all of those activities when you retired, not realizing an incurable diagnosis would interfere with your plans permanently twenty-five years before you could even be blessed with the possibility of retirement. All those fun things like dancing under the stars in Mexico, golfing with your friends, or even traveling around the world have been affected because your body can’t take it anymore. It’s a moot point anyway because now you can’t even think about retirement; it’s a struggle just to get through each day.
With your chronic pain, you can’t stand very long, greatly affecting your ability to perform tasks as basic as driving and cooking. You can’t hold your head up on your own, so you’re either lying back in a position any physical therapist would lecture you on in regards to poor posture, or you are sitting up holding your head in place. All day long! You need to lean your head against the toilet paper roll when you sit on the toilet, and that’s just the beginning.
We haven’t even discussed the emotional roller coaster you experience daily due to your physical condition, not to mention your weekly doctor appointments. How will you get to each appointment if you can’t drive? If you have a significant other who can take that much time off of work, you are extremely lucky. If not, what will you do? And what if you have other activities you’d like to participate in but you can’t drive yourself that far? How will you get to those? You’ve already heard the horror stories of being on a Metro Mobility bus for two hours each way, and the pain caused by that ride alone isn’t worth it. Does that mean you just can’t go? You are never pain free and anything you plan with others is always done with the caveat, “I really want to get together with you, but we’ll just have to see how I’m feeling on that day.” By the way, did I happen to mention you can’t work anymore due to the amount of pain you are in?
With this new life of yours looming before you, what do you think you are going to need in order to get through it? Wait a minute! I think I see a hand raised in the back row. Shout it out! “Support!” That’s exactly right. As we all know, “It takes a village”, and that applies to every single one of us. You just never know when you are going to be the one needing this support, but based on my own experiences as someone living with this chronic pain, I can guarantee you will need it.
Now considering the fact that “It takes a village”, how can you help support someone who can’t do everything themselves? You’re physically capable of driving, walking, standing and doing all the other normal things people do, right? If so, what would you do for someone that asked for help? Or even better. Maybe they didn’t ask for it, and you took the first step by offering? Isn’t this something that you would value greatly if you were in this person’s shoes?
Truly, what would you do? Or if you are already in this position, what do you do? Take some time to ponder this, and we’ll explore the topic of support more deeply in part two.