It’s Sankofa month at TBW–a time to reflect on the past and how to learn from painful situations into lessons. My relationship with my mom has been one of the most transformative situations of my life. It has caused me some of the most pain I’ve ever felt–completely rocked my world. But, my relationship with her has also evolved into something AMAZING. If I had not gone through the fire with her, and sought to learn from this experience, we would not be here today.

For several years now, she has been battling Huntington’s Disease, a rare, genetic condition that “deteriorates a person’s physical and mental abilities, with symptoms similar to ALS, Parkinson’s and Alzheimer’s”. She is only 61, but by the time she was 57, she needed 24-hour care: she twitched uncontrollably and needed assistance with her most of her everyday needs. Many people have looked at my relationship with my mom with pity, and I used to pity myself as well, but I now look at it from a position of strength. Here’s how I finally learned how to make peace with my mom’s illness.

OUR STORY

 

I am my mom’s only child; I am her baby! In High School and in my early 20’s, there were many times I wished I wasn’t. We argued constantly and grew apart. The drama started over my choice in boyfriend (of course!), and she swore he was no good for me. It turned out that she was 100% right about that (see my post on my abusive relationship)! But I have now come to see that my boyfriend was the surface issue. Our relationship started to fall apart, because I felt that she didn’t understand me. I felt like she wanted to control my life without attempting to understand who I was. She seemed hard-edged, un-empathetic, and like she wanted to turn me into a mini version of herself. I started to see her as bougie and out of touch.

My Junior year in high school was also the time that my mom started having some occasional and strange twitching in her left hand. No one knew what it was, but everyone dismissed it as something that would go away eventually. My mom went to see doctors, but no one knew what was going on (and because Huntington’s is SO rare, this is actually a very common experience). She even started to behave strangely, and slur her words at times! I remember one time in my Senior year that my mom was driving me and some friends somewhere. She was acting strangely, and one of my friends asked me if she was drunk. I started to feel humiliated by my mom. Just to break that down… It’s a very powerful thing to be HUMILIATED by a parent. Embarrassment is a temporary feeling that comes from your mom singing Luther Vandross off-key in front of your friends (which she also did regularly :-)!). But with humiliation, there is a shame, and a deep rejection. And that’s what happened with me.   

I started putting a lot of distance between us, even going all the way across the country to New York for college. I jumped at the chance to put distance between us so I wouldn’t be under her thumb, and create my own path. But, eventually her illness got worse. And by the time I graduated from college in 2007, my mom could no longer drive.

So, I came home. I gave up my first teaching job, a great life in NY, college friends, and started caring for her 24/7. I resented her, and became depressed.

So, how did I actually learn to make peace with all of this? It’s taken me years to learn these lessons, but here’s what I finally learned:

1. You CAN’T do it alone!

For a while, I took care of my mom all by myself. I was too proud to ask for help and I spent 12-20 hours of a day taking care of her. I put my life completely on hold, and I started to feel hopeless. I was young and none of my friends could empathize, because their parents were still healthy and able to work.

I finally started to realize that I needed help, so I started confiding my feelings in my dad, and he motivated me to find a support group. And luckily I found the Huntington’s Disease Society of America (HDSA) and joined it. It was one of the best decisions I’ve ever made, because it educated me, but also helped me find empathy and understanding from others. They didn’t think my mom’s story was weird! Over time, that acceptance helped take the stigma and shame away.

To all the “independent” people on this planet, who swear they can do it all by themselves and don’t need anyone for anything, YOU NEED OTHER PEOPLE. (Let me make sure that’s in all caps and bold!) It’s tempting to believe that our success is a product of “pulling ourselves by our bootstraps”, but that’s B.S! People have invested in you from before you were born. Everything you know today was taught to you by someone!

The desire to live in an I-can-do-it-all-by-myself way is called isolationism, NOT independence. Our egos make us think that this is an act of strength, but really it’s a mindset that will keep you lonely, and judgmental of others and yourself. It will also keep you from getting the transformative help you need. It actually takes more strength to admit you need help, and doing so helps you to move forward.

2. All you have is the present moment. Be right HERE–it’s all you can control!

Just to be clear, my mom’s condition is genetic. I have a 50% chance of inheriting her condition. Many of my family members have been diagnosed with it, so this is a very real risk. There is a test to see if I carry the gene or not, and if I do carry it, I will develop HD like my mom. When I found this out in my early 20’s, I started to live in complete fear. Despite the fact that HD usually starts affecting you when you are around the same age as your parent (in my case, around my mid to late 40’s), I thought every little twitch was a sign that I had it. I remember I had a muscle spasm in my eye one day, and was so distraught I cried all day!

I started to realize that I have NO control over what’s to come. And while that’s scary, I realized that I can’t be a slave to what MIGHT happen in the future. I was missing out on my present; I wasn’t living. I can’t control what happens in the future, I can’t rewind back in time to change the past, so all I can do is make the most out of my present. 

Even if I do develop HD, I have to make the most joy out of each day I have on this planet. We’re all going to die–that’s one of the things we all share. so to live in catatonic fear of it, when you have no control over it just makes you waste the days you do have!

My favorite Brad Pitt quote, from Troy:

3. LIFE is not out get you!

You have to accept that there will be sadness in life. I used to feel like I just had a “bad life”, but I was looking at the world through a victim’s lens, and only focusing on all the negatives in my life. But, life is not out to get me or victimize me.  That doesn’t honor all of the good things in your life, and believe me there are! Everyone’s lives have ups and downs. When I felt like life was out to get me, it made me feel hopeless. But really internalizing that life is both composed of good and bad moments helps you to have hope. If you think you’re doomed or have a bad life, then what’s the point in trying? 

A huge part of my relationship with my mom involved fear. Fear of becoming like her. Fear of having her illness, fear of being divorced and living alone. Once I stopped letting these feelings of pity and fear consume me, I was better able to create solutions and plan for her, instead of running from her and myself. (Especially when it came to difficult decisions about her care, like moving to an assisted living; more on that another time.)

Fear is normal, but it should not consume you.

 

4. I got to Know HER! She is NOT just an illness

Without realizing it, I had created a relationship with my mom that was based on pity. I had been reducing her to her illness, instead of treating her like a human being. I was so consumed with her everyday survival needs, that I forgot to enjoy her: laugh with her, reminisce with her, go to the movies with her. Once I started to see her for the human being she is, I started to see her.

The more I probed, I realized just how much of a bad ass my mom is! Very accomplished, and all, but deeper than a resume.

There were a lot of things that we did that hurt each other, but as I got to know her, I realized that everyone has a story and a reason they do what they do.

Prior to this, my mom had told me very little about her life growing up. She sat on her painful past as if to ignore it away, and to protect me from its unpleasantness. She was always so strong, and she secretly carried a multitude of burdens for me, without flinching. I think she thought that if she hid her sadness, her painful past would be forgotten and erased, but it never really worked. What she didn’t realize is that by never sharing her pain, she hid her truth from me. I’ve now come to realize that part of why we were distant back then, was because she sometimes appeared cold and distant, like she didn’t get me. She also indirectly taught me that if I had a problem or felt sad, then it was because I was abnormal or defective. Her fortitude didn’t make me feel like it was okay to feel sad. It didn’t seem like I was allowed to feel hurt or wounded. around her. I came to realize that she didn’t know how to relate to me in my pain and insecurities, as she’d spent a lifetime trying to ignore her own.

 

I understand her now. As a mom, a fiance, working with a job, I now understand her struggle, her insecurity. I understand her strength and her biological impulse to protect me no matter what. And I understand her love, so forgiving, so deep. Her illness forced us together in a beautiful way. And my empathy has allowed me to connect with her in unprecedented ways. We have both learned to forgive each other.