S03E16 – Multiple Sclerosis (MS) – Caregiver – Sadika

00:06
Ali Khawaja
Hey, everybody. Welcome back. Thanks for listening in. This is the second part to our ms conversation that were having. I have a caregiver now in the studio. I’m going to ask her, introduce herself and then we’ll just jump right in.

00:21
Sadika
Thank you, Ali. Thank you for having me as well. It’s really a pleasure to be here. I’m Sadiqa Kibi and I’m a mother of four. I have three sons and Rana is my eldest daughter. And I moved to the UAE a year and a half ago. And I’m also lebanese.

00:42
Ali Khawaja
Wonderful, wonderful. I’m going to jump right in because the audience have already heard Runa on a previous episode as a father. My kid sneezes and I’m in a panic, like, oh, my God, what’s wrong? Are you okay? Do I need to take you to the hospital? Are you okay? Are you okay? I was in the delivery room when my daughter was born. I think I have never felt more joy and more helpless in my entire life at the same time.

01:15
Sadika
Yeah, I know that feeling.

01:17
Ali Khawaja
I was like, this is really cool, but, oh, my God. Butterfly for the dirt. And my daughter started college last month. She’s 18 now, bless her. Thank you. But I still see her as this big. I still see her as a three year old running around Baba, let’s make brownies. And Baba’s making brownies now. She don’t got time. I’m busy. I got to go hang out with my friend. So I think parenthood is for me. That was where my life pivoted. A lot of my friends talk about. We have conversations, we talk. Some of my friends got married early in life. Some got married late. All of them had kids at different times. And we’ve always had these conversations and I tell them, I’m like, I didn’t feel a shift in my life when I got married. It was, all right, this is cool.

02:05
Ali Khawaja
I got a roommate. Cool type of vibe, whatever. But when my daughter was born, that is a distinct point in my life where I can say before and after I fully agree. How did it feel when you were in UAE at the time and your mom was in Lebanon? So I’m assuming there was a phone call that happened. How did that go?

02:31
Sadika
Well, at first, when I received the phone call, it was my brother, actually, that called me. He lives here as well. So the first phone call I got is that Rana is feeling dizzy and she’s not feeling well, and we’ve decided to bring her back home. But he did not tell me the diagnosis at first. So he kind of hid the whole thing, and I was alarmed. So as a mother, when you feel that there are words that are not being said and there is more to the story. So this made me kind of really push him to give me what was happening, and I was, no, this is nothing to be alarmed about to bring Rana home. Just a simple dizziness. I can come. But he said, no, we’re coming.

03:20
Sadika
And then he said that she might have multiple sclerosis or a virus, as the doctor here gave his diagnosis. And be prepared. She’s going to be on a wheelchair. And when we land and come out of the airport, so please don’t show. Try to hide your feelings. No tears.

03:48
Ali Khawaja
I would beside myself. Yeah, no way. I’m emotional now.

03:55
Sadika
So he was kind of preparing me. So try to be strong. Keep your tears to yourself. Don’t show that to Rana. But it really hit me, and I was in disbelief. So the first thing was, no way my daughter can have Ahmed. No way this is happening to us as a family. And I really couldn’t process. And I was anxious. And while waiting for her to come, so I can see with my own eyes to understand what was really the real situation. So there were at the airport, her three brothers, her father, myself, and I saw her coming out. She had a patch one of her eyes because her vision was affected. She was in the wheelchair, and my brother was pushing that wheelchair. There was those inner tears that were bubling, and I was kind of suffocating.

05:03
Sadika
And with the help of God, I kept my tears to myself. And, yeah, she was in my arms. And immediately went to the doctor’s clinic. We had the appointment prepared. And as she told you, everybody barged into the clinic because there was no way to keep three brothers outside. They wanted to hear everything for themselves. Yeah. And then she was admitted to the american hospital in Beirut to do all the tests and stuff. But still, until then, I was in disbelief. It could be anything, but not Ms. This is what was going in my head.

05:48
Ali Khawaja
That’s what I was going to ask you next. At one point, did you go from, because this is how my brain has worked ever since I had a kid, and I can’t explain the logic to people who don’t have children, even when I actually, I can’t explain it to anybody. I think when I was younger, my mom used to say, when you have your child, you’ll understand. I understand, mom. I understand. So for me, anytime something’s happened with the kids, I automatically go to Baba’s, going to fix it. I will figure it out. I will get on the laptop and I will research and I will call and Baba will. Don’t worry. Baba got you. Baba’s going to fix it.

06:24
Ali Khawaja
This is my know, at some point when the diagnosis got verified, and then you had that shift in mindset that this is real, this is not anything else that I wish it was that could be solved. How did that feel?

06:45
Sadika
Well, you know, in that hospital room, while everybody was buzzing around her like there was the doctor. There were two doctors, actually, and a few interns as well. And I stood in that corner because I had traumas with my three sons as well when it comes to health issues. So it has been a long journey when it came to health with my kids. And at some point, it affected me. I collapsed mentally, emotionally, and I had to see a psychiatrist and psychologist as well. And happening to Rana after all these years, I was like, this cannot happen, know? So I was in that corner. You can say I was totally frozen. There were no facial expressions. I kind of disconnected. This is what I remember. I completely disconnected. And she felt it and her brothers felt it.

07:51
Sadika
And when the doctors left, or before the doctors even left, there’s this humorous incident that happened, and I turned into a speech later, her eldest brother noticed that I was completely disconnected. And he was like, out of the blue, while the doctors were still there and buzzing around. And he was like, rena, how come you didn’t shave your legs? And everybody was just laughing. And Rena was. Her reply was like, abu Dhi, please let me regain my vision, and I will wax, I will do a laser, I will do anything, but please let me figure out what’s happening first.

08:41
Sadika
And then here, kind of, he turned around to me and he was like, listen, mob, you always told us that, do never allow the fickle finger of fate to kind of tumble your life, because life happens and you can’t do anything but keep focusing, stay focused, and try to figure out what is happening, the challenges that are happening, and try to control them, try to manage them. Do not allow fate to manage your life, because you are the storytellers and writers. So here he brought me back in the room, but I was in complete, devastating mode.

09:32
Ali Khawaja
I can say on that moment, I can’t even begin to imagine. There are certain things my brain refuses to process. And then as a parent that’s gotten more over the years, my kid’s cell phone is switched off. My head is thinking, they’ve been kidnapped and taking it to Mars. I know it’s 100% illogical. Most probably they’re hanging with their friends, as they usually are, and the phone got battery ran out or whatever. But these things, again, as a parent, you’re always trying to fix. I remember when the kids first got these iPhones and whatnot, and I told them, I said, listen, you want to have the privilege of having a phone. There’s two very basic rules. Two rules. Baba has two rules. First rule, if I call, I don’t care where you are, what is happening.

10:29
Ali Khawaja
If you’re in the middle of a movie, you’re in the bathroom, I don’t care. You answer. You never not answer. This is rule one. Rule two, your phone cannot run out of battery. Ever take a suitcase full of battery banks if you need it, cannot run out, by the way, still stands. If any of these two are violated, I will give you a lanyard to hang around your neck with one of the old nokias that runs for, like one week, and your smartphone will be taken away. They’ve taken it to heart. I have never had a situation where they don’t answer or whatever. At best, now my daughter is while they were in school, or even now that she’s in college, I’ll just get a text. Baba in class, I’m like, okay, call me after. That’s like the exception.

11:14
Ali Khawaja
Yeah, if you’re in class, at least you texted me back, I know you’re alive. You haven’t been kidnapped. Talk to me about after. When she was going through the initial treatment, and this is when it’s fresh and the whole family is trying to deal with it, and you’re obviously seen as a figurehead in the family.

11:33
Sadika
Well, when all this happened, at that moment in the hospital, I kind of pulled up my masks, if you want. And I just remembered my three sons and what I went through. And ever since, my eldest son, who comes after Rana immediately, he had an issue at the age of two. And then I would never, ever treat my kids as lesser human being. And Sadiqa, now this is going to be implemented again. Rana is still. Rana loving, has changed, although she has multiple sclerosis now, although she will have, let’s say, a certain condition or whatever, but Rana will remain Rana. And there and then I made the decision that she will remain independent, and I have to give her that independence. I’m not going to be that suffocating mother who’s going to be over her head all the time. Helicopter parenting, whatever.

12:42
Sadika
No, she will continue to do whatever she’s done. She will do her choices. She will do. And I’ll be there to support. She will know that I will be there at any time, whenever she needs to speak, whenever she needs any support, I’m there for her, but nothing more. She will lead her life as she used to lead her life.

13:05
Ali Khawaja
That’s amazing. I don’t think I could do that. My daughter makes fun of me now. She goes, baba, you call me now more than I’m at college, than I was at. So what’s your problem? I call you. What’s your what, Bill? Buck? Me.

13:19
Sadika
Yeah.

13:20
Ali Khawaja
What’s interesting is you were also.

13:25
Sadika
I am.

13:26
Ali Khawaja
You know, when the diagnosis came in and you flew out to Lebanon, you had children, you know, so you were grandma at the. You know, ever since I had kids, my mom calls me and I answer the phone. Hello, mama. How’s everything? Good. How’s Abdullah? Good. How’s Zoha? Good. Okay. Bye, mama. I’m also okay. Yeah, whatever. I’ve just been ignored ever since I had kids. Ignored. My mom lives ten minutes away. She comes over every day, every other day, not to see me. And I’ve said this many times. I’ve told her, too. I’m like, at least maybe once. Just fake say, I’m here to see Ali. Just fake say it. She literally called. Oh, we’re thinking of coming, me and your dad. Where’s Abdullah and Zoha? Zoha is in college. She’s not going to be back till late. Abdullah’s gone with his friends.

14:18
Ali Khawaja
Okay, we’ll come tomorrow. Mama, I’m whole. You can come see me. How did it feel? You have grandchildren in the picture and now your daughter got rolled in a wheelchair. What were your thoughts towards the grandchildren?

14:37
Sadika
Well, when Rana was brought in with my brother to Lebanon, the kids were still here with their father because they had school. So they came in later, she was out of hospital and she was back home. And by the time I got hold of my emotions and shoved everything on the shelf till later. And you know something? That we have a saying in Arabic. Mahalam, Nilwalad, Ilawalad, which means, who is more precious than your child? Are your grandchild children? And this is not true. Your children would remain the most precious gifts you’ve ever had. My grandkids, I love them so much. Of course, they are very precious, of course. But I’m here to spoil them.

15:34
Ali Khawaja
I was just going to say more than that. I asked my dad, no parenting. I asked my dad many years ago because my dad and me, we’ve had a very traditional relationship in there’s a little bit of formality, there’s a little bit of distance, there’s a little bit of get your shit together, some type of tough love, which is fine. I grew up with it. I’m good. But my dad and my son are like best friends since he was. Since he was a toddler. They’re wrestling and they’re fighting. I come back from the university to the house. Two of the sofas are turned over. I don’t know what’s going on. And after a certain point, when Abdullah got bigger than my dad, and then also, my dad’s now 70, I had to tell I’m like, abdullah, you can’t fight with Dalda like this anymore.

16:24
Ali Khawaja
Why can’t I fight with him? I want to fight with him. I’m like, you are very big, you will hurt him. And he’s not going to say no because he wants to play with you. Find other ways to play. I never had the amount of playtime they had. Not because I was jealous, but I just was inquisitive. I’m like, baba, you are so different. Mom also. But mom, is that this motherly thing is there. She’ll call me. Did you have lunch? Yes. Okay, I’m bringing lunch. Mom, I just said I had lunch. So what, you’re going to eat another lunch? I’m making it. So that’s always still. Even now it’s there. But with dad, it was such a difference. I’m like, is this the same guy? Hey, is this my father?

17:04
Sadika
You’ll experience that very soon.

17:07
Ali Khawaja
And then he told me, I asked him, baba, if you don’t mind me saying, what the hell? I don’t understand. He goes with you. I had responsibility. With your kids. I have zero responsibility. My job is to have fun. My job is to spoil them. I’m like, this makes so much sense. This makes so much sense.

17:26
Sadika
Yeah. So the plan was, when the kids were amongst us, is not to talk about Ms. Not at this stage. Because first of all, Rana, to figure out how she talked to them about that. And it was just like, mama sick. That was the only thing we spoke about. And we tried to kind of have a schedule for them, activities, going out with their uncles and with the rest of the family. And things went very well until Rana was okay and she regained her balance back, her vision back. She started slowly, kind of introducing what was happening and what she was feeling about. And yeah, this is how we worked it out with the good.

18:17
Ali Khawaja
That’s good. You told me you moved to the uae a few years ago now, a.

18:22
Sadika
Year and a half ago.

18:23
Ali Khawaja
How’s that been? I’m assuming much more interaction with your daughter and your grandchildren.

18:28
Sadika
Yeah, definitely. First of all, I have seven grandkids, and number eight is ongoing.

18:36
Ali Khawaja
The best news, babies are blessing.

18:39
Sadika
Yeah. You know, something very important to keep yourself mentally and emotionally fit is to fill out your time. Al Faraq in Arabic, or having this empty space, doing nothing, it gets you worried and it gets your mind ongoing and ongoing, and you start having movies in your and drastic movies, not happy movies. So I’m glad that I am an entrepreneur now. I’m glad that I have my own thing as well. And I’ve always respected since the beginning, I always used to say, I’m raising independent individuals, independent humans, because you never know, maybe this second I might leave this planet. So you never know. So I need to equip to, as Rena said, the power is within. I need to help them find that power for them to keep going. So this is my utmost.

19:53
Sadika
If you want fulfillment in life that I know that I’ve brought up independent human beings to this life, I think that’s good. They know how to face challenges, they know how to overcome whatever obstacles they might encounter in their lives. And when coming here, of course, Rana now is close. She can reach out more easily, but she’s independent. I don’t hover over her head. Even the grandkids, as you said, like your dad, I’m best friends. Anytime they want to come over, they sleep over at my place. We have our own special moment.

20:33
Ali Khawaja
Excellent.

20:34
Sadika
Yeah. So Brana’s leading her life as she used to lead it. Nothing has changed.

20:40
Ali Khawaja
Hamda. I like it. I like when I hear it. This is very nice. What advice would you have to caregivers who are freshly dealing with somebody in their family, having been diagnosed with something?

20:55
Sadika
Yeah. First of all, take care of yourselves, because if you’re not strong, if you’re not mentally healthy and emotionally healthy, you cannot take care of other people. The first thing you need to do is take care of yourselves so you can offer care and give care to whomever is around you. So that’s number one. Number two, do not hover over their head. They still are human beings. They still are. As I said, they’re no lesser human being. So the power is in them. Help them find that power. Whether if you cannot help them do that, maybe you can kind of give them an advice to join a course, a workshop, keep going, do their passion, whatever they want to do, help them do it. And number three, keep in mind that we’re not eternal being.

21:58
Sadika
And these people need to stand on their own feet, no matter what and find their way through their challenges and obstacles. And then something very important. Mental health is not a taboo. Depression is not a taboo. We are human beings. We have our ups and downs. Reach out for help. There is nothing wrong with going to a psychiatrist, psychologist, a coach, anyone that can give you that support or that can give you mainly that listening ear. Because as were speaking earlier, we thought listening was listening. Actually, we hear, we don’t listen, but listening is a totally different level. I mean, you really need to listen to those people. You really need to be there, present. And I like this quote by John Maxwell, who is my mentor, actually, and he says, life is in session. Are you present?

23:02
Ali Khawaja
That’s them. I agree. Very nice. Very nice. Excellent. I really appreciate the time you took out to come talk to us today.

23:14
Sadika
Most welcome. I’m so happy to be here. And pleasure and any help I can offer.

23:19
Ali Khawaja
I think this is exactly what we’re doing now is exactly what she did. And were discussing this prior to recording, is that the more conversations we’re able to have, the more conversations we’re able to share. Even if one person has the courage to say, you know what, I’m not having a good day. I’m not okay. Exactly. I need to reach out and ask somebody for help. I think that makes all the difference. Going to go back to what my mom has taught me over many years. And one of the things she says even now, she goes, whatever little you do will create ripples and ripples of wellness in your community and your society. So you keep fighting the good fight and you keep doing whatever you can in the capacity you can.

24:04
Ali Khawaja
And then with time and with effort, people will come to the cause and people will help with the cause and the word will spread and goodness will spread. It’s in the nature of goodness to be spread.

24:15
Sadika
Yes. So true.

24:18
Ali Khawaja
Thank you so much. Once again, everybody. Thanks for listening in.

24:21
Sadika
Thank you.

24:22
Ali Khawaja
I’ll have a lot of details down on the texty part of the posts so you can click and look at the different resources that are available and information that is, once again, thank you very much, ladies.

24:34
Sadika
Thank you. Thank you.