Tuesday, May 23, 2017
If I look back at all the times my anxiety has taken over my life, it’s hard to fathom. It started back when I was a kid. I often didn’t want to go to school and developed a stomach ache. It went undiagnosed for years. At age 19, I finally sought treatment, and now at age 44, I’ve struggled for years. I’ve missed important events, lost jobs, and friends because of my anxiety. I take medications that ought to be helping. Perhaps they are, I don’t know anymore. It’s entirely possible I would be worse off without them.
I remember back in my early 20’s, I was just getting used to driving on the highway. I avoided it for as long as I could. I had landmarks that I looked for every trip I took. If I didn’t see those landmarks, I immediately had an anxiety attack. Having an episode like that while driving is no picnic.
I get anxious about appointments weeks before they’re scheduled. By the time the date arrives, I’ve worked myself into such a frenzy that I can’t stop sobbing. Thankfully, I have a supportive husband that can help me work through what I’m feeling. Although, even his support doesn’t make the anxiety go away.
So, you want to know what anxiety feels like to me? You know that feeling when someone sneaks up behind you and startles you? For a brief moment, your heart races and your blood suddenly feels hot as it courses through your veins. Add onto that, you begin sobbing, and you’re unable to breathe because you can’t control the racing thoughts or what you’re feeling. Imagine feeling that for 30 minutes to an hour at a time.
Quite simply, anxiety is completely exhausting. When you finally crawl out of the fire, you’re feeling too weak to do much of anything. Most of the time, my coping mechanism is avoidance. I stay away from situations that could cause me anxiety.
So, you can imagine how frustrating it is to have an attack out of the blue. There may be a cause, there may not be, it’s hard to say. I really never know what to expect. Ironically, thinking of writing this article caused me anxiety. My hands are shaking even now as I type. It doesn’t take much to set me off, and that feels just like a living hell.
For the last couple of months, I’ve been facing some additional health concerns. Not necessarily mental health related, although the stress from them has certainly impacted me in a negative way. My family has a history of high blood pressure and heart disease. Both my parents have/had high blood pressure, my mom had congestive heart failure, and my sister was just diagnosed with it as well.
So, when I started to realize that they were taking my blood pressure multiple times every time I went to the doctor, and it was always at least a little high, I started to pay attention. Suddenly, I was waking up every single day with a headache, and my right foot, ankle, and calf were often very swollen. So, my dad bought me a blood pressure monitor, and I started watching it closely. It was never normal. Literally high every time I took it. The day I went to the doctor, it was 182/99. When I Googled that, they said that was call an ambulance level.
So, I went to the doctor and he just happened to have a couple of young girls there performing ECG’s and EKG’s that day. I got lucky, I suppose. They were nice enough girls, but sometimes when you’re in your 40’s, you forget you aren’t in your 20’s anymore, and that you really have nothing in common with the younger generation, so I did a lot of nodding and smiling. My husband was with me, and went to go get some blood work done, then came back to the room.
They were using the same goop they use when they give you an ultrasound, which I’ve experienced only to look at whether I have an ovarian cyst, not because I’ve had a baby. These young girls chatted away about their appointments, and how I smelled good. I had to roll over on my left side at one point, and I had fallen on it in the shower earlier that week, so it was a struggle.
I watched the screen thinking about all the times I had watched Teen Mom and 16 and Pregnant, and laughed about how it looked like a baby. I’m on the heavier side, and I was incredibly self-conscious lying there topless with essentially a large piece of paper draped over myself, as the tech chatted away and poked me with the glowing death stick of pain as I came to know it. I made some kind of comment about how hot it was in the room and being overweight you’re always kind of hot. Nobody knew what to say, so I went on a bit about how I had lost some weight, but being bipolar, I got really depressed and stopped taking care of myself.
The girl poking me painfully actually said outloud, “Oh my God, girl! I KNOW what you mean! I swear I am bipolar. Ha ha ha ha ha ha. Seriously, I had this other job, and every night I would get home from work and be so sad, and my boyfriend was like…you aren’t DOING anything with your life, that’s why.”
I was floored. I went through a million things in my head. The room was dark, but I tried to look over her at my husband, knowing he would be in the corner of the room ready to tear her a new one. I could’ve said a million things. I could’ve told her she was lucky she could work, as I couldn’t. I could have said, you’re in the medical field and you’re comparing your day to day sadness about having a crappy job with bipolar disorder. I could have said so much, and yet I said nothing.
I had many reasons for not saying a word. The first was that based on their previous conversations, it would go in one ear and out the other. However, the main reason was I was just so damn shocked that a young woman trained in the medical field could possibly know so damn little. All she did was further the stigma of mental illness and she was totally oblivious. Usually I’m pretty good with thinking on my feet, but I wasn’t on my feet. I was lying on a table half naked and decided that now would be a good time to practice the theory of “picking your battles”.
Once I got home, I started thinking about starting a petition that all high school and college students be required to take at least a mental health awareness course. I did start that petition, and it’s making the rounds online but not getting the attention I feel it deserves, so I’ll include the link here. Perhaps, if we can get to them early enough, they’ll know not to say ignorant things to people that truly do have health conditions that aren’t humorous.
I hope you’ll consider signing it, and not just for someone like me. For the little girl with Autism or the man with Schizophrenia that can’t fight for themselves. I wish I had been able to speak up and tell that young girl how wrong she was, but I guess I haven’t come to that point in my journey yet. There will be a day when I finally know exactly what to say, and I’ll be sure it gets said. You can count on that.
Often when it comes to the world of mental health advocacy, you find that you stumble into it head-first, having no idea how you got there. Which isn’t necessarily a bad thing, it’s just unexpected, and it takes a while to get your footing. Suddenly, you realize you didn’t leave yourself a trail of breadcrumbs to find your way back out, just in case it all becomes too much for you. As much of an honor as it is to help fight against the stigma of mental illness and to be the voice of the voiceless, it can be exhausting and time-consuming.
Sometimes your personal feelings fall by the wayside because you’re so focused on the care of others. I know at least in my situation, I’m terrified that one day I may have a serious setback again that requires hospitalization. What does that say to all of the people that have read my book or followed me on Twitter as I declare, you can do this! You are a warrior!
Do I look like a hypocrite telling them to keep fighting as I’m curled up in the fetal position having not showered in 3 days? The whole concept makes me feel like a giant failure. There have been times when I have had to step back or not get involved in certain situations, not because I didn’t care but because I needed to protect myself. I’ve seen some backlash from those experiences, but I can’t let that get to me. As I’ve often stated, I’m not a professional with a degree, and I’m certainly not getting paid to offer my advice, so unfortunately, there will be times when I am not 100% dialed in.
Which leads me to my next point. How do you cope with being an advocate when a loved one dies? In this case, it was my father, and I am devastated. It’s only been about five days. There are times when being online helps me keep my mind occupied, so I’m not perpetually in grief mode. At the same time, it can be incredibly difficult because you can’t participate to the fullest, so you feel as if whatever headway you made is lost. You sit back and watch as others are offered opportunities, or people are looking for writers for a story, etc. and you just have to allow yourself to say no. No matter how disappointed you feel.
Don’t get me wrong; this is not a competition. We’re all on the same team, but there are times when you’re struggling, and you just have to sit this one out, and my brain has a real problem with that.
Last night, I sat down in front of the computer to try to get a few things done. Before long, I realized I had been sitting there staring at it for about 5 minutes, with no idea what I was doing. I couldn’t remember a single thing I needed or wanted to do, and I just completely lost it. I had a horrible panic attack that originated in my arms; similar to that pins and needles feeling when a body part falls asleep on you. I had to drag myself away and hope that my brain would be functioning better today. To a certain degree, it is, but I still feel a nagging sense of panic.
I have things to accomplish today, such as this blog. I’ve had the first two paragraphs written for three weeks. I like to think that both my mom and my dad would want me to keep pushing forward to get to my goal. I wish my mom could see me now. The person I’ve become. I know my dad was proud, he told me so. I think she would be too.
So, as I take this little mental health break, I need to try to understand that it’s OK to step away for a while. Even though we were right in the middle of a whole bunch of projects, I’ll never learn how to process grief if I don’t take some time to do it.
You may see me stumble and even fall for a little while, and somehow I’m going to have to be OK with that. I hope you can be as well.
A little while before my father got so sick, I started a hashtag on Twitter #KeepTalkingMH I think it’s appropriate for not only the month of May, (being Mental Health Awareness Month) but for mental health in general. While I step back and focus on me for a little while, don’t think I’m not terrified that it will get swept under the rug and never heard of again. If I think long enough, I can find a vast array of topics to cause me yet another panic attack. So, it begs the question: Is being an advocate giving me additional pressures or am I burdening myself with additional pressures because I’m an advocate?
I personally think it’s both. So, I’m off to attempt to enjoy a day of nice weather and try not to struggle too much with my grief. It’s going to be a long road, but I’ve been on it before.
A few weeks ago, while I was on Twitter, I noticed that a lot of people have hashtags that they’re trying to promote related to mental health. For anyone that isn’t aware, a # plus a phrase is used on Twitter and other social media sort of as a search term.
For example, if you wanted to look up your favorite band, you can go on Twitter and do a search for #bandname and you will see all of the posts that others have made about the band. I hope that makes more sense; I know I had a heck of a time when I first started out.
After being online for a while and seeing the work people were putting into their hashtags, I noticed that it seemed like everyone was trying to promote their hashtag about mental health or mental illness. It made me wonder if there was a way to bring it all together into one hashtag, therefore making the mental health community even stronger. So, I started thinking about ideas, and I came up with #KeepTalkingMH. There’s a website called www.twubs.com where you can make sure there isn’t anyone else using your desired hashtag. If nobody else is using it, then you register it. I recommend paying the $9 fee to have exclusive rights.
My hashtag started to become popular. I picked a certain day to try and get it trending, and although we didn’t get there, we did have some exciting things happen. Celebrities like cast members from Mike & Molly, Kevin Smith, former WWE superstars and announcers, they all tweeted for us that day.
Since then, the popularity has grown. It’s easily found on Twitter, and it allows people to have a voice and talk about how they’re feeling. So, here I am today asking that you jump on the bandwagon and tweet #KeepTalkingMH today and every day!
Remember, it must be an original tweet, you can’t just retweet someone else’s.
To all mental health advocates out there, please consider using #KeepTalkingMH instead of creating a new hashtag. If we had just one hashtag that covered the entire spectrum, and everyone started using it, we could make a change in the way people view mental health.
You’ve been challenged! Keep using #KeepTalkingMH always and often and let’s see if we can get our message out there!
Tuesday, May 2, 2017
Guest Post - The Founder of TreasureLives Suicide Prevention & Mental Health Awareness Gets Personal by Melody Nolan, M.S.
(You can copy and paste all of the links into your browser to view them.)
I can still hear my four-year-old brother singing “Love is something if you give it away…you end up having more!” bit.ly/VIDEO_John_Memorial. I can also still hear the phone nearly 15 years later. I was in the depths of depression, so I didn’t answer…but the damned thing kept ringing. “Melody? I’ve got some bad news. John…is dead.” I don’t recall exactly what was said after that. I just remember that John had committed suicide. Given that I was struggling with suicidal ideation myself, there couldn’t have been a worse time to receive this news: If suicide was okay for John, it somehow made it a more acceptable choice for me.
I made it to the high school auditorium to find it filled with exponentially more people than I even know: this was for what was called a “Celebration of Life.” I am of the opinion that this term should be reserved for occasions when people are living. I believe replacing “Memorial Service” with “Celebration of Life” candy-coats the reality of death, and that when it comes to understanding the impact of suicide and therefore preventing suicides, this is detrimental. I celebrate the memory of John because that is all I have.
The most common theme among people contemplating suicide is the feeling of being a burden. My question is, what if you really are? I live with chronic physical and mental health conditions. It is exhausting for me, and it is exhausting for those who know me. Just ask them…those who are left, anyway. I must give credit to those who were honest: “Truthfully, it’s too hard for me to watch you become sicker and sicker;” “You just don’t fit in with my life’s pace.”
Really? I didn’t know friendship was contingent upon health.
Then, there were those who loved and supported me until they simply couldn’t take it anymore. They believed that love cures all. They had the best possible intentions and did everything they could to help me – ultimately to the detriment of the relationships. As time went on and my illnesses prevailed, they became exhausted and in one way or another, they disappeared.
The answer? Actually, there are three: honesty, balance, and boundaries. Don’t tell me it’s okay to call you 24/7 if it isn’t. Don’t encourage me to talk about what’s bothering me if the topics are disturbing to you. Don’t give so much of yourself to me that you have nothing left for anyone else because eventually, you won’t even have anything left for yourself. I can be needy, but I am not greedy. I am also naïve and I believe that if you tell me something is okay with you, that it is. Please do not lie to yourself and to me and then blame me for believing you.
You may fear that setting boundaries with me will kill me, but the truth is quite the opposite: setting boundaries will keep our relationship healthy. You will not become overwhelmed and leave, I will not be a burden, and I will not feel like the only way to relieve myself of my pain and you of the responsibility you feel for me is for me to die. You don’t need to be afraid to say “No” to me. I will respect you for it.
My second mom did everything she could think of for John when he was caught in the whirlwind of mental illness. She brought him into her home, adjusted her schedule to suit his needs, engaged in projects with him, and did volunteer work with him. She loved him unconditionally, just as she did all of us. She also did everything humanly possible to help ME for 30 years. I can’t think of a single thing that she didn’t try. I love her for it, and I will be grateful to her for all eternity. I am also saddened because I know our relationship took a toll on her and by extension the rest of the family. I believe that we did the best we could with what we knew, understood and believed at the time. However, I wish with all my heart that we had recognized the damage the lack of boundaries was doing to us both sooner than we did so that we would have had time to develop and enjoy a healthy, balanced relationship.
John ultimately chose to take his life; I choose to live mine. Initially, I was angry with John. Furious. Then, I felt abandoned. How do I feel today, four years later? I feel robbed of the opportunity to be in each other’s lives. John was an amazing musician, a generous person, and had one of the kindest spirits about him that I have ever encountered. I miss him immensely. He has left a void that can never be filled. The fact is that when you choose to take your life, you leave a hole in mine. That is not the legacy I want to leave, and I am determined to do all I can to choose to live and to help others do the same.
I witness compassion for and forgiveness of John while I continue to perceive resentment or at least fear of my needs…and I feel jealous. Jealous of John. People love John. People avoid me. John had the guts to do what I have wanted to do for decades. While people continue to “celebrate John’s life,” I continue to feel that I am a burden. I am still alive. I am still trying. Doesn’t that count for anything?
I often feel as though I would receive grace and forgiveness for suicide as opposed to blame, judgment, and criticism for the way I have lived. The truth is, there has not been a single day as far back as I can remember that I have not considered suicide at least once – even if just for a fleeting moment. This is a difficult existence. My reasons are that I am not productive enough; that no one would notice if I was no longer here; that people would be relieved if I died because they wouldn’t have to worry about me or interact with me; and feeling and having been told that I am or was a burden. Regardless of the fact that all of these messages have varying degrees of truth to them, they are very powerful triggers which for me can make the difference between being able to act responsibly versus needing hospitalization, and for some people, they can make the difference between survival and suicide. My point? Words create powerful messages embedded in my psyche. So does silence.
My practical response to John’s suicide was to open an eBay store, Lazarus Treasures, to honor his memory. Sellers donated a percentage of their profits to The Yellow Ribbon Suicide Prevention Program. Wanting to do more, I incorporated TreasureLives. TreasureLives’ mission is to educate the public about suicide prevention and mental health. We have a YouTube channel which broadcasts memorials of lives lost to suicide as well as testimonies of lives saved. We recently created a group on Facebook for Survivors of Suicide Attempts at bit.ly/TLs_FB_SSA. Our goals for the future include the writing and distribution of a mental wellness curriculum that extends from kindergarten through college and mental health advocacy for veterans, seniors, and those with disabilities. If you visit our homepage at bit.ly/TreasureLives, you will access statistical information about suicide, an extensive resource page, a blog, an online store, and links to our social media networks. You will also find “A Dozen Ways to Donate” and see how you can be part of our Wall of Heroic Volunteers. To view the Wall, please visit bit.ly/TLs_Heroes.
I made a few attempts to take my life when I was younger: It is debatable as to whether I wanted death or attention, but does it matter? If we all paid just a little attention to each other, those of us with significant special needs would not be a burden to any one person. This is what we mean at TreasureLives when we say “It doesn’t take much to be a hero.” Being my hero doesn’t mean that you do everything for me all the time: It means that you find space for me somewhere in your life, honor that space, and express to me that you cherish that space. It means that you do the best you can to take care of yourself because we cannot have a healthy relationship if you resent me. It means that you will give me the opportunity to respect boundaries rather than assume I will violate them. Most importantly, it means that in some shape or form you will celebrate my life now, with me, and not wait until after I am gone.
I am more than my illnesses. I am a musician and a writer. I am educated, creative and talented. I am a born advocate. I am a dedicated friend (I’ve been told on more than one occasion that I am more loyal than a dog.) Don’t assume that just because I have physical and mental illnesses that a relationship with me must be all about me. I don’t want that. Give me the opportunity to love and support you. I’m a great listener and when wanted I can give valuable feedback (sometimes even when not wanted…I’m working on that.) Being in a relationship with me doesn’t mean that you are supposed to meet all of my needs or fix me. YOU CAN’T! It means that you educate yourself about my conditions so that you understand that sometimes simply brushing my teeth is an accomplishment to be applauded; It means that you acknowledge my struggles, appreciate my efforts, and partake of what I have to offer – just as I do you and yours. Yes, I have many needs. One of them is to give. I invite you to get to know me beyond my symptoms and my sicknesses. Who am I? I am Melody Nolan, and I am the founder of TreasureLives.
*For more about my perspective on this subject, please watch “Suicide Skit,” penned by me, Melody Nolan at bit.ly/VIDEO_SS