How many of us wear an invisible veil each day? So many of us are afraid to show others how fragile or vulnerable we are from day to day. We have to keep this stoic facade in fear of being judged in some way or another. I will be the first person to raise my hand, especially with the last few days I have had with HS. Honestly, it feels like HS has had me in the a chokehold. I have always took pride in myself for being an open book, what you see is what you get. This belief took a shift when Hidradenitis Supprotiva has tried to take over my life. Of course my family, closest friends and fellow comrades who have HS understand, but what about everyone else? What about the people I meet when I am at the bookstore? What about the people I see as I am walking Gambino? What about the people I work with? What if they saw my “cracks”?
In one of my previous posts, I wrote about one of my cysts I called Bertha because she was a beast. I am glad to say, she finally burst. Just as I was about to get ready to do my happy dance, HS said “hold my beer!” She did not leave without leaving her mark on me to let me know she came, she saw and she attempted to conquer. There is a painful hole where she used to be. To keep the hole company, I am having not only new cysts, but everything is flared up. I honestly think all of this was triggered by stress. The not so funny thing is I was stressed about Bertha and not being able to walk. HS is a constant stress circle. As I limped into my physician’s office this morning, I passed a young lady who stopped me to tell me she really liked my hair. I smiled at her and with what little energy I had said “thank you.” I continued to limp into the office, I couldn’t help but to think what if she knew it took me 2 hours to shower and get dressed? ( I hope I remembered to put on deodorant) What if she knew each step I am trying to take is shooting severe pains all over my body? What if she knew about all of the cysts and flares that were having their own party on and inside of my body? What if she actually saw what HS looked like?
After spending all day in severe pain, I have had time to think about my cracks. I really did not have a choice because it hurts to sit and it hurts to stand. I was forced to lift my veil and be honest about how I really felt. Most of the time I am happy go lucky, but not everyday. I hurt. I cry. I have pity parties. I get scared. I need help. We don’t take off our veil because we don’t want others to see our truths. If something happens and our truths are seen by others, they sometimes blame us for being so stoic and not saying anything about it. Some may even blame you for being truthful because it causes them to reflect on their lives and their truths. We all know, life is short. Spend the rest of your days walking in your truth. If your veil just so happens to blow off or if you decide to take it off, hold your head up high and make no apologies for being human.
“There is a crack in everything.
That’s how the light gets in.”
― Leonard Cohen
As the year is about to close, I am hearing more and more people making New Year’s resolutions. I have never really been good at making or keeping those promises. I remember one year I resolved to stop saying bad words. I made the resolution at midnight and I did well until I got out of bed. Then there was the year I resolved to cook everyday and not eat out. I honestly tried, but I ended up wasting so much food because I have not yet mastered how to cook for one person. I don’t like leftovers and I don’t like messing up my kitchen.
After those failed attempts I decided to take the pressure off of myself and resolve not to make anymore resolutions. Instead, I decided I would do my best each day and try new things even if I have to do it afraid. I look back on the year and it has definitely been full of mountains and valleys, but in the midst of it all some small things that I accomplished are turning into wonderful beginnings of much larger things. So many of us overlook the small things because they are not often flashy or big public displays, but they matter too.
Here are some of the things I celebrated this year by dancing when no one was watching or by jumping up and down on my bed:
- Learned how to use an IPad even though I am a dedicated android user
- Went an entire week with a pain level of 5 instead of 10
- Upgraded my car on a rainy day
- Started writing my story for my book
- Danced with my granddaughter
- Told someone no and did not feel the need to explain
- Started saying yes more than no
- Started my LLC
- Investing in marketing my business
- Wore a tank top with the bandages under my arm
Celebrate getting dinner on the table before 10 o’clock. Celebrate not being stuck in traffic. Give yourself a pat on the back for choosing a salad over a cheeseburger or for choosing a cheeseburger over a salad. There is no such thing as something being too small to celebrate. We have to celebrate even the smallest of things while we are on our journey through life. It’s about the journey and not the destination.
“From small beginnings come great things.”
What did I do different? Was it a different food or ingredient? Did I wear a different material or was it just stress? Then the ugly realization that this is my life with HS just hit me. I have a cyst the size of a lemon on my abdomen. I woke up to this surprise on early Monday morning. I was unable to sleep the night before. There was so much tossing and turning, I finally got out of the bed. On the way into my home office, I felt a sharp pain on my abdomen. I went to the bathroom to check it out and there she was. She was only the size of a walnut then. Now she is the size of a lemon. I think I will name this one Big Bertha.
It hurts when I sit. It hurts when I stand. I hurts when I lay down. It hurts when I breathe. My wardrobe until Bertha leaves will consist of oversize shirts and hammer pants. (While I am dressed like this, I promise I will see a celebrity or my crush!)I had so many plans for this week and now I have had to change them. HS has taught me how to write in pencil because I definitely have to erase and edit my life almost daily. I have managed to work and take hot baths since her arrival. I try to play with Gambino when I can. He is learning all about HS and I am confident he will understand just as Ali did.
I wanted to write about something different, something more upbeat but HS pushed itself in front. I have no control over when I have bad flare days and try really hard to push through and take them when they come. I told my readers I would be honest with them about HS and this is definitely one of those days when what I want to do and what I am able to do don’t match up. I am definitely going to try again tomorrow.
I have added more pictures on the HS page of my blog. You will see some of the most beautiful and handsome people in the world who also suffer with HS. We will not hide and we are not alone.
Life is messy, people are irrational and nothing is perfect. All things considered, I am still here. Turning 41 today has been great and has been a time of reflection. When I turned 40, I had a sudden sense of dread because my “list” was not done. I had a list of “should have dones” I felt were mandatory to have completed before my birthday. Needless to say I didn’t finish it. What was I going to do? I wanted to have these things checked off and done. I felt like this list equated success and since it was incomplete I was somehow unsuccessful. After sitting in the feeling of dread for a while, I finally decided what I was going to do. ABSOLUTELY NOTHING! I decided to live instead. Don’t misunderstand me, I am an organized person who likes to plan but I no longer wanted to equate success or happiness with things or a list. I gave myself permission to not be so rigid, but instead take life as it comes. By the grace of God, hard work and a great support system, I have overcome many obstacles in life. I have and will continue to help people along the way because I feel like that is the reason we are here. That is success.
I leave you with this short poem I wrote in honor of turning 41 today. I am excited about what the next year has to bring. I know there will be wrong turns, detours, delays and maybe even some stop signs. Life is a journey and I am constantly learning and growing. I will survive it and be a better person for it.
I didn’t get the promotion, but I still have JOBS, I am okay.
I didn’t get the house I thought I wanted at the time, but I have a fabulous place and a roof over my head, I am okay.
I didn’t get the date I thought I was not going to be able to survive without, I am okay.
I have defeated some Goliath’s this year that I never thought I could face, I am okay.
Thank you God for not giving me what I thought I wanted, but what I needed instead. I am more than okay…. I am truly blessed.
I remember when I was in college and I was asked to write a paper in my Philosophy class on a picture or painting that was important to us. I chose the oil painting of my father. He was in his colorful dashiki while he was in the Navy. My father looked invincible in that painting. He looked so strong, confident and fearless in that exact moment. The painting is hanging in my home office and I have the pleasure of looking at it on a daily basis. I find myself smiling with an overwhelming sense of pride for my father. On the days I can manage to look at it without crying, I can’t help but wonder what was really going on in his life at that time. He was young, handsome and in the Navy. What could he possibly have to worry about right? Wrong! He was away from home, he missed his family and the Navy was not all glitz and glamour. He was human and he never claimed to have the perfect life. I often times wish I would have discussed this painting with him before he passed away. Unfortunately I did not know it existed until after he was gone.
I really get enjoyment out of looking at photos. I stare at them and wonder what the person was going through at that time in their life or what they were thinking at the exact moment the photo was taken. As I reflect on some of the pictures I have taken throughout the years, I laugh because although I may have looked as if I had it all together, it was a completely different story before and after it was taken. I am looking at a picture my friends and I took while we were in graduate school. We were at Pappadeux’s laughing and smiling as if we did not have a care in the world. Quite the contrary, life was coming at me from all directions. There were days I did not know how I was going to finish all the tasks I had to get done. During this time in my life, I had a lot going on. I was working full time while attending graduate school full time. It was hard to balance home, work and graduate school. I was feeling home sick because my father was alive during that time and I missed him so much. I called home daily just to hear his voice. I was even dealing with HS, but I did not have a diagnosis at that time. I had these cysts that would appear out of nowhere. I was in pain daily. I was not able to share it with anyone because I did not think they would understand. You could not tell any of these things just by looking at my snapshot.
With the popularity of social media, it is easy for people to get caught up in envy when it comes to other people. When you look at Facebook , Instagram or any other media platform, you see people always on vacation, going out with friends or shopping. I have heard people say how it makes their lives look boring and they find themselves depressed after being on social media. The pictures we see are but a snapshot of their lives. Rarely do we get to see the crying children, overdue bills, break-ups or the other imperfect moments we have daily. Life was going on before the snapshot and will continue after it as well. All we do is capture moments in time. Each and every one of us have a different journey. It is important we follow our own journey and not envy or compare our lives to someone else’s snapshot.
I know are two simple words that can take various tones when used. When parents ask their kids to remember to clean their room or finish their homework, kids typically say “I know!” As adults when we hear something we think we already know, we tend to interrupt the speaker by abruptly shouting “I know!” I know can also be used as a positive confirmation. I was talking to my nephew Jay yesterday and I told him I loved him. Jay said “TT I know.” I could not stop smiling. My heart was filled with joy and I responded with a “thank you sweetheart.” It actually made me stop and think about how many people actually know they are loved.
For someone to know that you love them is so important. There are people that use the word very loosely and sometimes it’s hard to take them seriously. It is important to stop and think about who you tell and how you show people you love them. Do you only say the word without action or do you show the person the best way you know how. Not only do I tell my nephew whenever I speak to him I love him, but I also call him to check on him. We text each other just to say hi. I let him know he can come and talk to me about anything free of judgement. When I go back home to visit, I make sure I spend as much time with him as I possibly can. Here are some other ways you can put your love into action for your family and friends so they know you care.
- Encourage their dreams
- Be physically and mentally there as much as possible
- Really listen to them
- Write a letter or send a text
- Set clear boundaries
- Celebrate a recent success
- Share and make good memories together
I think it is fair to say we live in an instant gratification society. We don’t want to wait on anything nowadays. Once we decide we want something, we want it right then and there. Standing in lines, being on hold or sitting in traffic is often times seen as the bane of our existence. I shamefully admit I am guilty of being impatient at times. Atlanta traffic will cause even the most Zen person to want to turn around and go back home. The traffic report tells us to expect delays on certain routes, but for some reason when it happens we act as if we didn’t hear anything ahead of time. Rather than wait for our product, an answer to our question or arrival to our destination, we would rather leave or give up all together.
For some reason we tend to feel like a delay is a denial. As if there is someone telling us “No!” without any explanation. I recently placed an order with Amazon and was guaranteed free 2 day shipping. I ordered an item for my mother to take home to her at the end of the month. Yes, you read it right, the end of the month. I placed the order on a Tuesday and it was supposed to arrive in the mail by the end of business day on the following Thursday. When I checked the mail on Thursday there was no package. I even waited an hour and went back to check again, just in case the postman was running late. The package did not arrive as promised. I was so upset. I wanted my package so that I could check it off my list and put it directly in my trunk. When I got back home, I immediately got on the phone with Amazon to attempt to track down my package. The representative apologized for the delay in delivery of my package and began her search. I have to admit I was initially upset and I felt like canceling the order. The representative asked me if I wanted to return the item for a full refund. That was when I had a moment of clarity about my package. 2 day shipping is a nice incentive, but things do not always go as planned. Life happens and at the end of the day (maybe not that particular day) I was still going to get my package. The package was important because it was for my mother, but it would be 3 weeks before I would get it to her. The arrival date didn’t seem to be as important and I thought it was. I told the representative no thank you and I would wait on my package. She credited $5.00 to my account for the inconvenience .
Frustration and impatience comes along with living everyday life. Practicing patience when something is delayed will not only help us calm down in the present, but help us become more mindful when similar situations occur in the future.